"Dementia is not just a medical journey, but it's a financial and emotional one." ? Devon Banning, CFP

Are you avoiding the financial conversation with your loved one because it feels uncomfortable or overwhelming? Do you find yourself wondering how you'll afford care as your loved one's needs increase?

Are you concerned about making the right financial decisions during this challenging time?

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we know that money is often the last conversation we want to have, but it's inevitable. We have to have it.

Today, we're sharing five essential tips for navigating the financial aspects of dementia caregiving with Devon Banning, a Certified Financial Planner with Moran Wealth Management. Devon has more than 15 years of experience across a range of roles in the financial industry, and he brings invaluable depth of experience with dementia family caregiving. He's spent the majority of his career managing financial lives for individuals and families, many of whom were suddenly thrust into the caregiving role due to dementia.

Here's what makes this conversation easier: it'll be much more manageable when we respect our loved ones' dignity, independence, and their wishes throughout all of our conversations. Today is about helping you learn options for taking your next step?options that are going to make you feel more confident without needing to have all the answers at one time.

This episode supports step three of our Navigating Dementia Caregiving Roadmap Guide: understand the financial situation. If you've been putting this conversation off, you're definitely not alone. This is an area many caregivers hesitate to step into. It's deeply personal, and it can feel intimidating?especially if we wish we'd addressed it sooner.

Connect with us and share your tips:

Website: https://thecaregiversjourney.org/

Donate: https://give.cornerstone.cc/thecaregiversjourney

Instagram: https://www.instagram.com/thecaregiversjourney/

Facebook: https://www.facebook.com/thecaregiversjourneys/

Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/

Email: [email protected], [email protected]

Full Show Notes

https://thecaregiversjourney.org/53-the-dementia-care-financial-conversation-five-essential-tips-alzheimers-and-other-dementias-2/

Additional Resources Mentioned

Moran Wealth Management https://moranwm.com/

Disclaimer:This podcast is for educational and informational purposes only and does not constitute investment, legal, or tax advice. The views expressed are those of the participants as of the date recorded and may change without notice. Nothing discussed should be considered a recommendation or solicitation to buy or sell any security or to engage in any particular investment strategy. Listeners should consult their own financial, legal, or tax professionals before making any financial decisions. Moran Wealth Management is an SEC-registered investment adviser. Registration does not imply a certain level of skill or training.

Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Takeaways

Get the Financial Conversation Started

Use these 8 steps to guide the conversation

Understand the different stages of financial considerations

Understand The Financial Position of Your Loved One

Consider Leveraging a Financial Planning Expert

Read More in This Blog

https://medium.com/@sueryansolutions/financial-planning-for-dementia-caregiving-five-essential-tips-edf00b98be82

Are you prepared if a major storm threatens your area? Do you know whether to evacuate or shelter in place with your loved one who has dementia? Have you created a communication plan that accounts for potential power outages and cell tower failures?

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we understand how storm season brings critical decisions that require advance planning. Whether your loved one lives at home or in a care community, preparing for storms demands special considerations for people living with dementia.

Recently, we spoke with Celeste Lynch, Executive Director at Moorings Park Grand Lake in Naples, Florida. With nearly 40 years of experience in senior living leadership, emergency planning, and resident safety, Celeste shared invaluable insights on storm preparedness from both the care community and at-home perspectives.

If you're following along with the Navigating Dementia Caregiving Roadmap Guide, today's topic aligns with Step 14: Create a Care Plan and Family Emergency Plan.

Let's explore four essential tips for weathering storms safely with your loved one who has dementia.

Connect with us and share your tips:

Website: https://thecaregiversjourney.org/Donate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/thecaregiversjourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Full Show Notes

https://thecaregiversjourney.org/52-preparing-for-stormy-weather-four-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

Navigating Dementia Caregiving Roadmap guide: https://thecaregiversjourney.org/guides/Moorings Park community: https://www.mooringspark.org/ FEMA assistance programs: https://www.fema.gov/DisasterAssistance.gov: https://www.disasterassistance.gov/Relief organizations such as the Red Cross: https://www.redcross.org/Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Takeaways

We shared 4 tips:

Preparing Ahead of Time Decide whether you will shelter in place or evacuateStrengthen Your Communication Plan Before, During, and After the Storm Post storm, safely get them back in their routine

Read More in This Blog here

"The difference between TV as comfort and TV as chaos isn't the screen?it's understanding how the changing brain experiences what's on it."

Do you rely on television to help occupy your loved one's time? Does your care receiver seem agitated or anxious when the TV is on? Have you noticed them leaving the room when a show is playing or struggling to follow programs they once enjoyed?

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we've learned that what soothes us as caregivers can actually cause distress for people living with dementia. In this episode, we spoke with Allyson Schrier, co-founder and president of Zinnia TV and former caregiver for her husband with frontotemporal dementia, about why regular TV can be problematic and what we can do about it.

Let's explore four essential tips for managing TV time effectively.

Connect with us and share your tips:

Website: https://thecaregiversjourney.org/Donate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/thecaregiversjourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Full Show Notes

Additional Resources Mentioned

Zinnia TV https://www.zinniatv.comSupport the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Takeaways

Tip 1: Be Thoughtful About What?s On TV

The answer isn?t to take TV away completely. We need to be thoughtful about what we put on the TV and pay close attention to how our loved ones respond.

Tip 2: Target Something That Creates Curiosity Without Agitation

The goal is to find programming that engages without overstimulating or causing your loved one to fall asleep (because daytime sleeping can lead to nighttime wakefulness).

Tip 3: Leverage Simulated Presence Therapy

The innovative approach of simulated presence therapy takes advantage of how people with dementia can experience confusion between what?s on screen and what?s actually happening ? and uses it to benefit them.

What is simulated presence therapy? Research has shown that when someone will only take medication or follow instructions from a specific person (like a daughter or doctor), showing them a video of that person giving the instruction can work just as effectively as having the person physically present.

Tip 4: Create Engaging Alternatives On Your Own

Beyond television, there are creative ways to provide visual engagement that work better with how the dementia brain processes information.

Observe and Adjust

Managing the television experience for someone with dementia isn?t about finding one perfect solution. What works today may not work next month as the disease progresses, and that?s reasonable. The process is about observing how your loved one responds and adjusting accordingly.

The key is understanding the changing brain experiences television very differently than we do. Through being thoughtful about what?s on the screen, targeting content that engages without overwhelming, leveraging simulated presence therapy, and creating our own alternatives, we can turn TV time from a potential source of agitation into a positive opportunity for comfort and connection.

Read More in This Blog here

Are you struggling to pull your family together to create a working support system for someone living with dementia? Do you find family members disagreeing on what needs to be done or how to help? You're not alone, and there's a path forward.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we've learned that transforming family dynamics into effective teamwork is one of the most challenging?yet most rewarding?aspects of the caregiving journey.

In this episode, we spoke with Dr. Barry Jacobs, a clinical psychologist and family therapist who brings both professional expertise and personal caregiving experience to this conversation. Barry cared for his mother with vascular dementia and his stepfather with Alzheimer's disease for seven years, and he co-authored the AARP Caregiver Answer Book with his wife, psychologist Julia Mayer.

This content aligns with Step 8 of our Navigating Dementia Caregiving Roadmap: Start Planning for the Next Stage of Care, particularly when building your personal support network of family and friends.

Connect with us and share your tips:

Website: https://thecaregiversjourney.org/Donate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/thecaregiversjourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Full Show Notes

https://thecaregiversjourney.org/50-family-dynamics-in-caregiving-four-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

Barry?s website www.caregiveranswerbook.comBuy the Caregiver Answer Book on Amazon https://amzn.to/4i9V9ZLNavigating Dementia Caregiving Roadmap guide https://thecaregiversjourney.org/guides/#guidesSupport the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Takeaways

Transforming your family into an effective caregiving team isn?t easy. It?s worth the effort ? not just for your loved one with dementia ? but for every member of your family.

These four tips provide a framework:

Create consensus (everyone on the same page).Define an ongoing format for decision making (regular meetings with clear rhythm).Build a family caregiving plan (who does what and when).Plan to deal with conflict (don?t let disagreements become disrespectful).

Do you know what you need to do immediately after your loved one passes? Many caregivers don't. Are you worried about missing important tasks or feeling overwhelmed by the sheer volume of administrative, financial, and legal responsibilities?

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we've navigated the challenging process of handling death-related responsibilities firsthand. Between us, we've experienced the loss of multiple loved ones and learned valuable lessons about what needs to be done and when.

Connect with us and share your tips:

Website: https://thecaregiversjourney.org/

Donate: https://give.cornerstone.cc/thecaregiversjourney

Instagram: https://www.instagram.com/thecaregiversjourney/

Facebook: https://www.facebook.com/thecaregiversjourneys/

Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/

Email: [email protected], [email protected]

Full Show Notes

If you are following along with our 20 step Navigating Dementia Caregiving Roadmap guide this is part of Step 20. This is the first guide listed on our guides page.

There are many things that can be done ahead of time. We covered these in podcast episode 30 - End of life preplanning and blog as well as in the matching worksheet you can find on our website in the guides section called ?End of Life Service Worksheet?. Click here to get to the Guides page, scroll down to find the sheet.

Tip 1: Prioritize these things immediately after death1.

Tip 2: Move to this list within the first few days and weeks

Tip 3: Over the next few weeks and months - manage their estate

Tip 4: Focus on the things to prioritize once the estate has been closed

Are you feeling overwhelmed trying to care for aging parents while raising children? Do you find yourself stretched thin between different generations, each with their own unique needs?

My name is Sue Ryan. As a caregiver for loved ones with Alzheimer?s and other types of dementia, I understand the unique challenges faced by those in the sandwich generations. I recently spoke with Christy Byrne Yates, a licensed educational psychologist and author of ?Building a Legacy of Love: Thriving in the Sandwich Generation.? Christy has personally navigated the challenges of caring for aging parents while raising her own children, and she brings both professional expertise and lived experience to help families thrive during this demanding season of life.

Connect with us and share your tips:

Website: https://thecaregiversjourney.org/Donate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/thecaregiversjourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Full Show Notes

Additional Resources Mentioned

Chirstyyates.com - https://www.christyyates.com/Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Takeaways

Tip 1: C ? Choose Your Role as a Caregiver

The first step in successfully navigating the sandwich generation is making a conscious choice to embrace your caregiving role. Many people say ?I didn?t choose this.? or ?I had no choice.? We always have a choice. Even not making a choice is still a choice.

Tip 2: A ? Address the ?Elephants? in the Room

Successful sandwich generation caregiving requires having difficult conversations early and often. These are the ?elephants? dancing in every family room that everyone sees ? but no one wants to discuss.

Tip 3: R ? Recharge Through Ruthless Self-Care

Recharging takes on critical importance when you?re caring for multiple generations. Self-care isn?t selfish ? it?s essential for everyone you?re caring for.

Tip 4: E ? Enlist Your Support Team

You?re not meant to journey alone, and this is especially true for sandwich generation caregivers who face multiple competing demands. Building a comprehensive support team is essential for sustainable caregiving.

Tip 5: S ? Surrender Control and Embrace Grace

Perhaps the most challenging aspect of sandwich generation caregiving is accepting that you cannot control everything, even though you desperately want to. If everyone could just do things your way, life would be so much easier ? but that?s not reality.

Read More in This Blog here

Have you noticed yourself feeling sad when your loved one can't remember their phone number? Do you find yourself withdrawing from friends or losing patience more easily? These feelings might be grief?and you may not even realize it's happening.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we've learned that grief doesn't only come after our loved one passes away. It's present throughout our entire caregiving journey, from the moment of diagnosis through each individual change along the way.

The good news is that understanding grief?recognizing it, honoring it, and learning to move through it without getting stuck?can transform how we experience our caregiving journey. Today we're sharing six essential tips to help you navigate grief with grace and compassion.

Connect with us and share your tips:

Website: https://thecaregiversjourney.org/Donate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/thecaregiversjourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Full Show Notes

https://thecaregiversjourney.org/47-navigating-grief-throughout-caregiving-six-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

Guide: Navigating Dementia Caregiving Roadmap: https://thecaregiversjourney.org/guides/Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Takeaways

Read More in This Blog here

Have you reached the point where you're now fully responsible for your loved one's care and safety? Do you find yourself guiding others or managing all aspects of their daily needs? You've entered what we call "later on"?the final stage of the caregiving journey, and while some aspects may feel more manageable, new challenges and emotions emerge that require specific attention and planning.

This final phase completes our comprehensive 20-step roadmap for dementia caregiving, covering the essential steps when you've moved beyond the messy middle into full caregiving responsibility.

Connect with us and share your tips:

Website: https://thecaregiversjourney.org/

Instagram: https://www.instagram.com/thecaregiversjourney/

Facebook: https://www.facebook.com/thecaregiversjourneys/

Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/

Email: [email protected], [email protected]

Guide: Navigating Dementia Caregiving Roadmap https://thecaregiversjourney.org/guides/

Donate: https://give.cornerstone.cc/thecaregiversjourney

Full show notes

Additional Resources Mentioned

Later On - You are now managing all aspects of their care

18. Plan for their End of Life Service:  

You may have done this with your loved one just after their diagnosis. If not, do this without them now:26 minute TCJ podcast: 30. End of Life Service PreplanningTCJ blog: 30. End of Life Service PreplanningLeverage this End of Life Planning Worksheet. 

19. Call in hospice.

If you are not working with palliative care or a US Medicare GUIDE program organization (both of these are able to tell you when it?s time to call in hospice)Find a hospice organization. Get a doctor's referral. Schedule an initial evaluation. It?s almost never too early to get the initial evaluation, so don?t wait.Search ?hospice? + ?your country? - or in the US - ?your state?. Scroll down until you get below the sponsored links where it says ?Places?:Click on ?More places? to get a list with a map.  Notice rating stars and those located around your area.Schedule an initial consultation with two so you can compare.Educate yourself on when to call in hospice:26 minute TCJ podcast: 29. When To Call In HospiceTCJ blog: 29. When To Call In Hospice.

20. Continue your self-care. Learn about Anticipatory Grief. 

Read this AARP article:How To Manage Mourning a Loss Before It Happens.Honor your grief, be compassionate with yourself, reach out for support:Each of us navigates the loss of our loved one in our own time and way.It?s reasonable when your caregiving journey ends you may feel any or all of:A sense of relief because your journey has ended and your loved one is no longer suffering, Guilty at the same time because you feel relieved.A loss of your own identity, from prioritizing your loved one for so long.Not sure what to do next.If you feel lost, reach out to your family, support group, faith community, friends, professionals. Most importantly - reach out!

Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Takeaways

The Three Stages of the Dementia Caregiving Journey

1. In the Beginning - Your loved one receives a diagnosis. 2. The Messy Middle - You begin asserting control; this is when it gets messy!3. Later On - You are managing all aspects of their care. 

Have you moved beyond the initial steps of your caregiving journey and now find yourself needing to take more control while your loved one still believes they can do most things independently? Are you noticing that simple tasks are becoming increasingly challenging for them, yet they resist your help? You?re not alone! You?ve entered what we call the ?messy middle? stage of your caregiving journey.

We created for you the comprehensive, 20-step caregiving journey roadmap guide, Navigating Dementia Caregiving Roadmap

Connect with us and share your tips:

Website: https://thecaregiversjourney.org/Donate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/thecaregiversjourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Full Show Notes

Additional Resources Mentioned

Messy Middle

First Steps - You recognize it?s time to assert more control 

11. Focus on safety. 

Listen to these podcasts or read these blogs.Home Alone - Hear about the deal breakers for living home alone:21 minute TCJ podcast: 6. Home AloneTCJ blog: 6. Home Alone.Medication - Understand strategies to safely manage medication:20 minute TCJ podcast: 20. Medication ManagementTCJ blog: 20. Medication Management.Home Safety - Find approaches to the basics of home safety:25 minute TCJ podcast: 7. Home Safety TCJ blog: 7. Home SafetyWandering - Learn ways to manage three types of wandering: outside, inside and during the night.20 minute TCJ podcast: 4. Wandering TCJ blog: 4. Wandering.

12. Continue to prioritize your self-care. 

Understand how to approach the realities of self-care:23 minute TCJ podcast: 27. The Realities of Caregiver Self-CareTCJ blog: 27. The Reality of Caregiver Self-Care.

13. Educate yourself on activities of daily living (ADLs).

Prepare for changes in your loved ones ability to manage their ADLs.Listen to these podcasts or read these blogs on activities of daily living:26 minute TCJ podcast: 9. Preparing for Incontinence TCJ blog: 9. Preparing for Incontinence21 minute TCJ podcast: 14. Bathing and DressingTCJ blog: 14. Bathing and Dressing21 minute TCJ podcast: 15. Personal Care e.g. brushing teeth, trimming hair TCJ blog: 15. Personal Care21 minute TCJ podcast: 16. Eating and Drinking TCJ blog: 16. Eating and Drinking.

14.Create a Care Plan - at minimum a Family Emergency Plan.

25 minute TCJ podcast: 33. How to Create a Care Plan TCJ blog: 33. Creating a Care Plan.

Messy Middle - Continued

Second Steps - It?s time for more support

15. Start or increase leveraging dementia/adult day programs. 

Community resource finder: Select Community Services and choose Adult Day Centers for your search.

16. Start thinking about professional help.

Educate yourself: Evaluate continuing care communities (even if you never plan to use one) just in case.33 minute TCJ podcast: 28. Home and Community Living Options TCJ blog: 28. Home and Community Living Options.Understand the types of paid caregivers:26 minute TCJ podcast: 32. Hiring a Paid Caregiver TCJ blog: 32. Hiring a Paid Caregiver.Find an organization to help. Search online: ?Senior Care Advisor? + ?your area?.Look for options yourself. Go to the Community Resource Finder sponsored by the Alzheimer?s Association and AARP.

17. Continue your education.

Take the Savvy Caregiver Advanced training (this can be taken in-person or virtually).Delusions:38 minute TCJ podcast: 23. DelusionsTCJ blog: 23. Delusions.Incontinence:26 minute TCJ podcast: 10. Incontinence Begins TCJ blog: 10. Incontinence Begins.

Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Have you completed the first six essential steps of the comprehensive 20-step caregiving journey roadmap guide Navigating Dementia Caregiving: Your Resource Roadmap for Every Stage? Are ready to take on more? Do you find yourself wanting to learn faster and more easily than trying to figure everything out on your own? If you answered ?Yes?, you?re in the right place for the next phase of the dementia ?In the Beginning? journey.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer?s and other types of dementia, we?ve learned that building knowledge, and preparing for progression, are crucial for sustainable caregiving. We recently talked with Jenny Gay, licensed clinical social worker with Emory Integrated Memory Care, about our comprehensive 20-step caregiving journey roadmap guide: Navigating Dementia Caregiving Roadmap. In this podcast, we?re sharing steps 7?10.

Connect with us and share your tips:

Website: https://thecaregiversjourney.org/Donate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/thecaregiversjourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Full Show Notes

https://thecaregiversjourney.org/44-navigating-dementia-caregiving-roadmap-in-the-beginning-steps-7-10-alzheimers-and-other-dementias/

Additional Resources Mentioned

Navigating Dementia Caregiving Roadmap Guide

In the Beginning - continued

Next Steps - You are ready for more 

7. Continue your education:

Take the Savvy Caregiver course in person or online.Read this magazine:  Mayo Clinic Living with dementia: A guide to caregiving and support. Find and take a virtual dementia tour near you. In the United States, in your search engine, type ?virtual dementia tour? + ?your state?. For example: ?virtual dementia tour Florida? or, outside the US, replace your state with your country.

8. Start planning for the next stage of care.

Build your personal support network:21 minute TCJ podcast: 40. Create Your Personal Support NetworkTCJ blog: 40. Create Your Personal Support Network.Find and try a memory cafe (Caregivers and care receivers go together).Investigate dementia day centers (also known as adult day centers that include dementia care programs) for your care receiver. Community resource finder: Select Community Services and choose Adult Day Centers for your search.Ask your loved one?s medical team for a home safety assessment.The goal is to have someone evaluate your home for safety and dementia care needs. This is usually available through palliative care, GUIDE program, or an order from a physician.You can get a free assessment from social services with this order, or you can pay for an independent assessment from a private organization.

9. Investigate your local government community support: 

In the US, contact your local Area Agency on Aging. Search for yours at Eldercare.acl.gov or call 1-800-677-1116.Call and set up a screening for eligibility:They will point you to any free government services where you are eligible. Be sure to find out if you are eligible to get paid to be a caregiver. 

10. Evaluate driving risks. 

Some US states have specific requirements for individuals with dementia to report their diagnosis and potentially undergo driving evaluations. Listen to this podcast or read this blog:21 minute TCJ podcast: 5. Taking Away the KeysTCJ blog: 5. Taking Away the Keys. 

Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Takeaways

The Three Stages of the Dementia Caregiving Journey

1. In the Beginning - Your loved one receives a diagnosis. 

2. The Messy Middle - You begin asserting control; this is when it gets messy!

3. Later On - You are managing all aspects of their care. 

Have you ever felt overwhelmed because you don?t know what information you need, can?t find reliable sources, or feel frustrated by too much conflicting advice?

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer?s and other types of dementia, we?ve learned having a step-by-step roadmap is crucial for navigating the beginning of your caregiving journey. We recently talked with Jenny Gay, licensed clinical social worker with Emory Integrated Memory Care, about the comprehensive 20-step caregiving journey roadmap guide Navigating Dementia Caregiving: Your Resource Roadmap for Every Stage. This podcast is bringing the first six essential steps to take immediately after diagnosis.

Connect with us and share your tips:

Donate: https://give.cornerstone.cc/thecaregiversjourney

Instagram: https://www.instagram.com/thecaregiversjourney/

Facebook: https://www.facebook.com/thecaregiversjourneys/

Full Show Notes Here

In the Beginning - First Steps - Right after the diagnosis

1. Choose a palliative care organization.

This will likely also serve as your hospice organization later in your journey.

In your search engine, type ?Palliative Care? + ?the name of your country? or, in the US ?the name of your state?.

Schedule an initial consultation with more than one so you can compare.

Educate yourself on what palliative care is:

27 minute The Caregiver?s Journey (TCJ) podcast: 42. When To Call In Palliative Care

2. Create an Advance Care Plan.

Get your legal documents in order and do some initial end of life preplanning with your loved ones input:

Contact your attorney or an elder law attorney NAELA.org.

Listen to this podcast or read this blog on elder law attorneys:

32 minute TCJ podcast: 31. Elder Law Attorneys

Alzheimer?s Association legal documents overview:

Leverage this End of Life Planning Worksheet.

3. Understand the financial situation.

Work with a financial advisor - especially those who focus on seniors. Elder law attorneys can also advise in this area.

Alzheimer?s Association resources overview of financial planning

4. Find support groups.

First and foremost for you. If possible, find a support group you can attend in person:

The Alzheimer's Association support group finder has support groups for a variety of types of dementia.

If your loved one is interested a support group:

Dementia minds has online groups for people living with dementia.

Many local senior centers have support groups for your loved one to increase socialization:

In the US, go to your ?countyname?.gov website and search for a senior center.

The Alzheimer?s Association 24/7 helpline in the US: 1.800.272.3900.

5. Educate yourself on early caregiving journey topics.

Listen to these two podcasts or read these two blogs.

Memory Loss:

29 minute TCJ podcast: 2. Memory Loss

Communication:

20 minute TCJ podcast: 3. Communication ? in the Beginning

6. Investigate the US Medicare GUIDE program.

Listen to this podcast or read this blog:

23 minute TCJ podcast: 39. Is the Medicare GUIDE program for you

Understand if your loved one may be eligible:

https://www.cms.gov/priorities/innovation/guide/faqs#ben-cgs.

If you think you might be eligible, find a US Medicare GUIDE program provider near you.

There may be several who cover your zip code so explore options.

Go here to find a GUIDE program:

Enter your state.

Under models select ?Guiding an Improved Dementia Experience (GUIDE) Model?.

Click ?Display selected?.

You can use the plus and minus signs in the upper right corner to zoom in closer to your area.

When you find the location you want, click on the blue dot and detailed contact information will show.

The Three Stages of the Dementia Caregiving Journey

1. In the Beginning - Your loved one receives a diagnosis.

2. The Messy Middle - You begin asserting control; this is when it gets messy!

3. Later On - You are managing all aspects of their care.

Full blog here

Are you feeling overwhelmed by the complexity of dementia care? Do you find yourself wishing you had more support navigating medical decisions and planning for the future? You?re not alone - and there?s specialized help available that many caregivers don?t fully understand.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer?s and other types of dementia, we both wish we had understood what palliative care is and how to leverage it earlier in our journeys. Unfortunately, when palliative care was first explained to us, it was explained incorrectly, and neither of us took advantage of all the great things palliative care has to offer.

We recently spoke with Dawn Kolderman, a registered nurse and Senior Clinical Director of Palliative Care Services at Avow, who has more than 30 years of nursing experience with the last 20 focused on palliative and hospice care. Dawn shared invaluable insights about palliative care that we wish we had known sooner.

Connect with us and share your tips:

Website: https://thecaregiversjourney.org/Donate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/thecaregiversjourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Full Show Notes

Additional Resources Mentioned

Avow Palliative Care LinkSupport the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Takeaways

Tip 1: Understand What Palliative Care Actually Is

The first step is clearing up common misconceptions about palliative care. 

Palliative care is a holistic approach to a life-limiting disease. This includes dementia ? which is indeed a life-limiting disease. 

The key difference between palliative care and hospice care:

Palliative care patients are at the beginning of their journey and are still seeking aggressive, curative treatment while seeing all their providers and specialistsHospice care patients are generally at the end of their journey, no longer seeking aggressive treatment, and focusing on comfort care.

Palliative care is an additional supportive layer of care that works collaboratively with all your existing medical providers. Most importantly, palliative care focuses heavily on the caregiver.

Tip 2: Call Palliative Care In ? Here?s How

Many caregivers don?t realize how accessible palliative care is or when to call it in. The answer is simple: the earlier, the better.

Tip 3: Understand the Goals of Palliative Care

Palliative care has specific, comprehensive goals that address both immediate and long-term needs.

Primary goals include:

Relieving physical symptoms first

Supporting the caregiver and family

Education and collaboration

Advanced care planning (ACP). This crucial component involves sitting down with the patient, caregiver, and family to discuss important decisions while your loved one can still participate in these conversations.

Tip 4: What Else You Need to Know About Palliative Care

There are several important aspects of palliative care that many people don?t realize.

Your loved one won?t look sick. The goal is to help them live their life fully.

Early intervention builds stronger relationships.

The nurse navigator?s role is specifically to connect you with community resources you might not know about. 

Read More in This Blog here

Have you ever thought, "I wish I knew how to have a constructive conversation with my manager about how to align my work responsibilities and my caregiving responsibilities?" Today we're sharing strategies to help working family caregivers thrive at both work and at home. We're sharing four tips.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we understand how caregivers often feel torn between their responsibilities at home and their professional responsibilities, which they're trying desperately to fulfill, often without support.

Connect with us and share your tips:

Website: https://thecaregiversjourney.org/Donate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/TheCaregiversJourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Full Show Notes

https://thecaregiversjourney.org/41-aligning-work-and-caregiving-responsibilities-four-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Takeaways

Tip 1: Self-Identify and Strategically Disclose

Assess your company culture firstExamples of supportive company policiesDisclose early in the journeyPlan your conversationFrame it collaborativelyDocument everything

Tip 2: Build Flexibility

Explore flexibility options in your organizationPropose pilot arrangementsConsider team involvementCreate backup plansLeverage technologyConsider career flexibility

Tip 3: Leverage Your Resources

Connect with colleagues who are also caregiversExplore Employee Assistance Programs (EAPs)Look for community resourcesTake things off your plate

Tip 4: Plan for the Unplanned

Understand your benefits and protectionsCreate a caregiving budgetExplore financial resourcesBuild an emergency fundPrepare for career transitions

Read More in This Blog

https://sueryansolutions.medium.com/40-building-your-personal-caregiving-support-network-9f9639e9ae87

?In the marathon that is caregiving, the difference between exhaustion and endurance isn?t willpower, it?s the strength of the support network we build around us.? Sue Ryan

Are you feeling overwhelmed by the responsibilities of caregiving? Do you find yourself thinking, ?I don?t have time to get everything done.? or ?I should be able to do this myself.?? You?re not alone, and there?s a better way forward.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer?s and other types of dementia, we?ve learned building a strong personal support network is crucial for sustainable caregiving. Studies show that dementia family caregivers face overwhelming emotional challenges.

Connect with us and share your tips:

Website: https://www.thecaregiversjourney.comDonate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/TheCaregiversJourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Full Show Notes: https://thecaregiversjourney.org/40-create-your-personal-support-network-five-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

27. The Realities of Caregiver Self-Care https://thecaregiversjourney.com/the-realities-of-caregiver-self-care-four-essential-tips-alzheimers-and-other-dementias/32. Navigating the Caregiver Hiring Process https://thecaregiversjourney.com/32-navigating-the-caregiver-hiring-process-five-essential-tips-alzheimers-and-other-dementias/Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Takeaways

Tip 1: Assess Your Needs and Make a List

Ask yourself:

Do I have time to get everything done that needs to be done?Am I physically strong enough to handle all caregiving tasks?Do I find myself losing patience or empathy?Is my loved one struggling with activities of daily living that I can't manage alone?

If you answered yes to any of these questions, it's time to ask for help. 

Tip 2: Create a List of Who Can Help and What They Can Do

Think about all the people who have offered to help or who might be willing to help. Map your list of potential helpers to your list of needs. If multiple people can help with a particular task, list them all?it's better not to rely on just one person.

Tip 3: How to Effectively Ask for Help

Recognize that some people want to help your care receiver, while others want to help you. Be specific and direct about what you need and why you need it.Remember that the people on your list have likely already offered to help or have shown willingness to support you.Adapt your approach based on the person you're asking. 

Tip 4: When People Offer to Help, Say "Yes"

Avoid these common traps:

"It would be easier just to do it myself.""No one can care for my loved one like I can.""I should be able to do this myself.""I feel guilty?they have their own busy lives."

Tip 5: Maintain Your Support Network and Adjust as Things Change

Encouraging open communication with your support team membersBeing proactive about finding new support team members when neededChecking in regularly with your helpers to keep them informed and engagedWatching for signs of burnout in your helpers?they may experience caregiver fatigue tooAddressing inflection points in your loved one's care needs

Read More in This Blog https://sueryansolutions.medium.com/36-building-your-personal-caregiving-support-network-9f9639e9ae87

Is the Medicare GUIDE Program for you? Today Nancy and I are sharing insights from Amy Imes of Emory's Integrated Memory Care about the new Medicare Program GUIDE. We're going to help you understand what it is and how to know if you can leverage it. We're sharing three tips.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we are so excited to share this information with you. This is an awesome opportunity to learn about the US Medicare GUIDE Program. With big announcements happening on July 1, 2025, we're excited to give you an overview so you can understand how you might participate in the GUIDE program.

Let us introduce you to Amy. Amy Imes is a gerontological nurse practitioner who is a trusted expert in geriatrics, demonstrating a deep understanding of the unique healthcare needs of the aging population. Throughout her career, Amy has played a pivotal role in building care models?that's important to the GUIDE program?and developing teams that yield superior outcomes. In addition to her clinical work, she is a member of the team at Emory's Integrated Memory Care, which is a nurse practitioner-led primary care practice for patients living with dementia. She's also the program lead for the Medicare GUIDE Program at Emory Healthcare.

GUIDE stands for Guiding an Improved Dementia Experience. It is a US Medicare pilot program that aims to provide better support and resources for persons living with dementia and their caregivers. Which is awesome.

You should know that it's a pilot program. Please let's all support it because we need to prove that this pilot program which focuses on helping dementia caregivers actually works so that this can become a standard part of Medicare and can also be expanded globally. It would be ideal for the US to prove it's worth so that we can help other countries take advantage of these kinds of support because they're watching and they're aware of it.

This is a groundbreaking program that is being offered around the country. So definitely we want to show up and show out as people tend to say sometimes. As of today, July 1st, there are approximately 390 programs across the country that have been vetted by Medicare to provide this program, and so it is really going to have an impact for persons living with dementia.

Full Show Notes

https://thecaregiversjourney.org/39-is-the-medicare-guide-program-for-you-three-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

To find a guide program near you: Go to this CMS website page and put in your state and under models select ?Guiding an Improved Dementia Experience (GUIDE) Model?

Then click ?Display selected?

You can use the plus and minus signs in the upper right corner to zoom in closer to your area and find the program closest to you.

There may be several who cover your zip code so explore options

Emory Integrated Memory Care: https://www.emoryhealthcare.org/centers-programs/integrated-memory-care-clinic

Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Takeaways

What the Medicare GUIDE Program Offers

One-on-one support and coaching by dementia prevention providers

Care navigation through an often difficult and chaotic healthcare system

Education and training resources for caregivers

Respite care

Tip 1: Understand Your Eligibility

Tip 2: How to Find a GUIDE Program Near Me

Tip 3: How to Integrate GUIDE with Your Existing Medical Team

About Emory's Integrated Memory Care GUIDE Program

For those in the Atlanta area, Emory's Integrated Memory Care is led by nurse practitioners who are all dementia specialists and geriatric specialists. They bring everything under one umbrella with geriatric psych, licensed social workers, and RNs on their team. This eliminates doctor hopping and multiple visits.

Read More in This Blog here

Do you wish you could get a good night?s sleep? We do too!

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer?s and other types of dementia, we appreciate the insights Dr. Glenna Brewster, PhD, RN, FNP-BC, Assistant Professor at Nell Hodgson Woodruff School of Nursing at Emory University, shared for all of us about her sleep study titled SLEEPMATE, and how we can all create good sleep habits.

Dr. Glenna Brewster?s background is impressive, and her passion for good sleep is inspiring! In addition to her responsibilities as a professor, she is a nurse scientist, family nurse practitioner, and she leads the Emory University Mind at Rest research team, which develops and tests practical, evidence-based programs to reduce sleep problems and improve health outcomes for people living with memory loss or dementia and their caregivers.

Good sleep isn?t just for your care receiver, this is for you too!

According to Dr. Brewster:

Sleep problems, especially if you?re a caregiver or person living with cognitive impairment, are significant. You might have a hard time falling asleep, wake up multiple times during the night, or notice that as the disease progresses there is daytime sleepiness. Sleep disturbances are prevalent both in care partners or caregivers and people living with cognitive impairment.

Dr. Brewster has developed the SLEEPMATE study for caregivers and people living with cognitive impairment and types of dementia. It?s a six-week virtual intervention where you participate together. The study examines whether the intervention is feasible, acceptable, and if it improves sleep outcomes. At the end of this blog post is the link you can use if you?re interested in participating in this virtual study.

This topic is incredibly valuable for us as caregivers. We?ve learned the need for quality sleep ? and what not having it is like. We?ve also learned that we?re often so focused on quality sleep for our care receiver, we don?t prioritize our own sleep as caregivers!

One important take-away from Dr. Brewster for caregivers it?s so easy not to consider ? or to lose sight of:

Your quality of sleep is every bit as important ? and sometimes even more ? important than your care receiver?s.

Full Show Notes here

Additional Resources Mentioned

Dr. Glenna Brewster, assistant professor, shares her innovative study designed to improve the sleep outcomes of persons living with preclinical and early-stage dementia and their caregivers. Brewster is also founder of the Mind at Rest research lab.For more information about joining this study, visit mindatrest.org/contact/.Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Takeaways

Tip 1: Practice Good Sleep Hygiene

Tip 2: Limit Daytime Naps

Tip 3: Make Your Bedroom Like a Cave

Tip 4: Schedule Worry Time Earlier in the Day

Tip 5: Keep Your Bedroom for the Three S's

About the SLEEP-MATE Study

Dr. Brewster's study is recruiting pairs. The person who is receiving the care doesn't have to be diagnosed with dementia, just have a complaint or an experience of cognitive changes. Caregivers or care partners?different people want to be called different things based on where in the dementia journey they are?both people participating, both having some type of sleep disturbance or sleep problems.

That could be difficulty falling asleep, difficulty staying asleep (meaning that you fall asleep and then you wake up, and when you wake up, you have a hard time falling back asleep), or significant daytime sleepiness or some other type of impairment during the day. It's for people who are living within the contiguous US. Each of you gets an honorarium for participating as a thank you for your time and investment in participating in the study.

If you have any questions or want to find out more about the study, please reach out at 404-712-9164 or you can check out their lab's website at www.mindatrest.org.

"When it comes to caregiving, the assumption about being able to take what we've learned and just naturally grow is not always going to be true."

How do you think you would feel if you were caregiving for a second or third person living with dementia? Would you feel more prepared because of your previous experience? If you answered "yes," you might be surprised by what research is revealing about experienced caregivers.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, both of us have been caregivers more than once, and we recently learned about enlightening research from Dr. Emily Mroz, a researcher at Emory University's School of Nursing who coined the phrase "experienced caregiver." Her research is shedding light on a common phenomenon that affects millions of families: providing dementia care for multiple loved ones throughout adulthood.

Dr. Mroz is a tenure-track assistant professor and social behavioral scientist who studies how people think, feel, and act within their social and personal situations. With training in developmental psychology, gerontology, geriatrics, and public health, she uses her multidisciplinary perspective to develop resources and interventions that support people living with serious illness, family caregivers, and those who are bereaved.

Through her research and interviews with caregivers, Dr. Mroz has identified crucial insights about experienced caregivers that challenge common assumptions and offer practical guidance for those stepping into the caregiving role again.

Full Show Notes

https://thecaregiversjourney.org/37-studying-experienced-caregivers-four-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

Dr. Emily Mroz, assistant professor and social-behavioral scientist, discusses her research on improving how patients and caregivers navigate serious illnesses such as dementia, end-of-life care and bereavement. Link to study flyer here To join this study, visit survey.qualtrics.emory.edu/jfe/form/SV_cYfshxWcThSSV5s.Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Takeaways

Tip 1: Avoid Assumptions About Who Is Prepared to Be a Dementia Caregiver

Tip 2: Assess How Prepared You Really Feel

Tip 3: Don't Hesitate to Get Involved in Skills Training and Support Groups

Tip 4: Share Your Stories with Grace, Not Judgment

The Importance of Research for Experienced Caregivers

Dr. Mroz's study is part of a growing recognition that experienced caregivers represent a significant population with unique needs and strengths. Her virtual research study involves participants completing surveys about their caregiving experiences and sharing their stories to help researchers understand the differences between new and experienced caregivers.

Study details:

Focuses on people currently in active caregiving roles, including those early in their journey with a second or third care recipientParticipants receive a $50 gift card honorariumSessions are conducted virtually and take about one to two hoursCan participate alongside other dementia caregiver research studiesResearch is crucial for developing resources specifically tailored to experienced caregivers

Read More in This Blog here

?An educated and confident family caregiver who knows what to do in their role is really the absolute best medicine for the care receiver.? Dr. Carolyn Clevenger

Do you know extensive research specifically focused on dementia caregivers is being conducted? Are you aware of innovative studies designed to equip family caregivers with navigation skills? Now you will, and you?ll be learning about valuable opportunities to strengthen your caregiving journey.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer?s and other types of dementia, we are continuously learning new ways to support our health and well-being, and that of our care receivers. We recently discovered the groundbreaking dementia caregiver research, the CANDO Study, Dr. Carolyn Clevenger, DNP, RN, GNP-BC, AGPCNP-BC, FAANP, FGSA, FAAN, Professor at the Emory University Nell Hodgson Woodruff School of Nursing is conducting. When most people think about dementia research, they focus on studies involving people living with dementia or pharmaceutical treatments. This crucial area of research focuses on supporting the family caregivers themselves.

Dr. Clevenger is a professor and gerontological nurse practitioner who is nationally recognized as an education leader in advanced practice nursing and geriatrics. Carolyn founded, and directs, the comprehensive dementia care model called Integrated Memory Care (IMC), which provides memory and primary care in a single integrated approach for people living with dementia and their care partners.

Full Show Notes

https://thecaregiversjourney.org/36-learn-to-navigate-support-systems-four-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

Dr. Carolyn Clevenger, a nationally recognized educational leader in advanced practice nursing, geriatrics and gerontology, shares her groundbreaking work on dementia family caregiver education programs that teach new caregivers how to transition into the role and navigate various support systems.For more information about joining this study, visit scholarblogs.emory.edu/CAN-DO/.Savvy Caregiver course: Available face-to-face or online (in-person version includes support group benefits)?Best Programs for Caregivers? website: A collaboration between the Benjamin Rose Institute on Aging and Family Care Alliance featuring only research-proven programs.Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Additional Resources Mentioned

Takeaways

Tip 1: Understand Different Levels of Care Early

Home-Based CareCommunity-Based ProgramsResidential Care Options

Key considerations:

Each level has different eligibility requirements and payment structuresAvailability varies by state?some follow federal guidelines, others have state regulationsPeople often wait until they desperately need memory care but try to access assisted living instead, creating unnecessary stress

Tip 2: Stay Ahead of Financial Challenges

Protect your assets while maintaining oversightUnderstand the early warning signsWatch for judgment impairment issues

Tip 3: Leverage Legal Support from Elder Law Experts

What sets elder law attorneys apartSpecialized dementia expertiseLong-term benefits

Tip 4: Take Evidence-Based Classes

What makes evidence-based courses effectiveMeasurable outcomes

The CAN-DO Study: Training Caregivers as Navigators

Dr. Clevenger's current research project, CAN-DO (Caregiver As Navigator Developing Skills Online), trains family caregivers to navigate four critical systems: healthcare, financial, legal, and family systems.

Course structure:

Six-week online course following three families through different types of dementiaEach day presents real-life scenarios with appropriate responses and preventive measuresVideos from subject matter experts including elder law attorneys, investigators, estate planners, and healthcare providers

Is your loved one in a memory care community, or are you considering moving them into one? Understanding how to build a collaborative relationship with the care team is crucial for ensuring the best outcomes for your loved one.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we've learned that creating a true partnership with care community staff can dramatically improve quality of care and reduce stress for everyone involved.

We recently spoke with James Lee, CEO and co-founder of Bella Groves, an award-winning memory care community. With over 17 years of experience in senior living and memory care, James has developed valuable insights on how to transform what is often an adversarial relationship between family caregivers and professional caregivers into a collaborative partnership.

Full Show Notes

https://thecaregiversjourney.org/35-build-a-partnership-with-your-care-community-six-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Takeaways

Tip 1: Assess the Overall Fit

When looking for a memory care community, many families focus on practical aspects like location, price, and amenities. While these factors are important, James suggests that philosophical alignment and rapport with the management team are even more crucial for long-term success.

When evaluating potential communities, James recommends shifting your mindset from "us versus them" to "us collectively versus dementia." This perspective can transform the relationship from the beginning.

Tip 2: Embrace the Community Aspect

Moving your loved one from home to a community setting represents a fundamental shift in their care environment?from one-on-one care to being part of a group.

Tip 3: Acknowledge Your Role Has Changed

When your loved one moves into a care community, your role shifts from being the primary caregiver to being a care partner working alongside professional caregivers.

Tip 4: Recognize That the Diagnosis Will Progress

A critical aspect of the care partnership is understanding that your loved one's condition will continue to change over time. In fact, by the time someone moves into a memory care community, they're often in the steeper part of their dementia journey where changes happen more rapidly.

Tip 5: Acknowledge Your Grief

The dementia journey involves ongoing loss, a phenomenon Sue calls "drip grief." As your loved one's condition progresses, you experience new losses almost daily?abilities that disappear, memories that fade, personality changes that emerge.

Tip 6: Engage with the Community Caregiving Team

The families whose loved ones have the best quality of life tend to be those who actively engage with the care team. This engagement goes beyond basic communication to building genuine relationships with the people caring for your loved one.

Building a True Partnership

Creating a collaborative relationship with your loved one's care community team isn't just about being nice?it's about achieving the best possible outcomes for your loved one with dementia.

By reframing the relationship from "us versus them" to "us collectively versus dementia," you can transform what is often an adversarial dynamic into a true partnership. As James explains, "You are your loved one's expert, we are dementia experts. And the two together give us the best chance to get this right."

Read More in This Blog here

Adding a new caregiver to your support team can be a challenging transition, whether they're coming into your home, assisting your loved one who lives alone, or joining the care team in a memory care community. This transition can be particularly difficult for those caring for loved ones with Alzheimer's or dementia, as changes in routine can cause confusion and resistance.

If your loved one doesn't think they need help (and let's be honest, many don't), don't give up too quickly. Be patient and allow the process time to unfold. As one experienced caregiver shared, "He told the new caregiver for at least the first couple of weeks, every time she came, 'You need to go home.' She would just smile at him and say, 'Well, I'm not going home just yet.'"

Are you prepared for others to take care of your loved one? Do you have a care plan in place? Having a comprehensive care plan is one of the most important tools a caregiver can create ? not just for emergencies, but for everyday peace of mind.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer?s and other types of dementia, we?ve learned the importance of creating a care plan for our loved one. We spoke with Amanda Lukoff, co-founder and CEO of Eleplan, about what a care plan is and how to create one that works for your unique situation.

Amanda's journey to creating Eleplan was deeply personal. Her brother Liam, who has autism, is her "North Star" and the inspiration behind her career path, including going to law school for special education law. Through observing her parents' caregiving journey with Liam, Amanda recognized the need to capture all the knowledge that lived in her parents' heads so that others could provide care that truly honored who Liam is as a person.

Connect with us and share your tips:

Website: https://www.thecaregiversjourney.comDonate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/TheCaregiversJourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Additional Resources Mentioned

Episode 32: Navigating The Caregiver Hiring Process https://thecaregiversjourney.com/32-navigating-the-caregiver-hiring-process-five-essential-tips-alzheimers-and-other-dementias/Eleplan Website: https://www.eleplan.com/Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Full Show Notes

https://thecaregiversjourney.com/33-how-to-create-a-care-plan-five-essential-tips-alzheimers-and-other-dementias

Takeaways

Tip 1: Start with the Basics

The first step in creating a care plan is to document the essential information that would allow someone to provide short-term care (even for just 30 minutes) while you step out.

This includes:

Emergency contactsMedications and dosagesHigh-level meal preferencesAllergiesRelevant medical conditions

Tip 2: Outline Preferences and Daily Routines

Beyond the basics, a good care plan should capture what makes your loved one unique?their preferences, personality traits, and daily routines.

Your care plan should include:

Likes and dislikesDaily schedule and routinesBedtime and morning ritualsBehavioral patternsEmotional triggers (both positive and negative)

Tip 3: Document What to Do in an Emergency

Crisis situations demand clear instructions. Your care plan should outline:

What constitutes an emergency for your loved oneWhen to call 911 vs. other resourcesWho to contact and in what orderSpecial instructions for EMTs or ER staffLocation of important medical documents

Tip 4: Collect Key Contacts and Documents

Gathering important documents in one accessible location is critical for seamless care. This includes:

Insurance cardsHealthcare directivesPower of Attorney documentsGuardianship formsMedical history and medication lists

Tip 5: Keep Everything Accessible and Current

A care plan is only effective if it's up-to-date and easily accessible. Amanda frames this with an important question:

"Do I have a system that is as dynamic as the needs of my loved one and the ever-changing piles of documents and information?"

Whether you're using a physical binder, shared digital documents, or a specialized platform like Eleplan, the key is having a system that makes updates easy and ensures the information is available whenever and wherever it's needed.

Read More in This Blog

When the time comes to bring professional caregiving support into your loved one?s life, the process can feel overwhelming. Whether you?re hiring a caregiver for home care or to complement care in a community setting, understanding how to find, evaluate, and select the right person is crucial for both your peace of mind and your loved one?s well being.

We are Nancy Treaster and Sue Ryan, we?ve developed five essential tips for hiring a paid caregiver, based on real experiences and practical advice from caregiving experts. These insights will help you navigate this important transition with confidence and clarity.

Connect with us and share your tips:

Website: https://www.thecaregiversjourney.comDonate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/TheCaregiversJourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Full Show Notes

https://thecaregiversjourney.com/32-navigating-the-caregiver-hiring-process-five-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

Episode 5: Home Alone https://thecaregiversjourney.com/leaving-your-care-receiver-alone-six-essential-tips-alzheimers-and-other-dementias/Episode 28: Home and Community Living Options https://thecaregiversjourney.com/time-for-a-change-home-and-community-living-options-five-essential-tips-alzheimers-and-other-dementias/Episode 30: Elder Law Attorneys https://thecaregiversjourney.com/they-know-what-we-dont-elder-law-attorneys-four-essential-tips-alzheimers-and-other-dementias/Episode 33. How To Create a Care Plan: Five Essential Tips / Alzheimer?s and Other Dementias https://thecaregiversjourney.com/33-how-to-create-a-care-plan-five-essential-tips-alzheimers-and-other-dementiasSupport the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Takeaways

Tip 1: Assess Your Loved One?s Needs

Before you begin searching for a caregiver, it?s important to thoroughly understand what kind of support your loved one requires. This assessment will guide all your subsequent decisions about the type of caregiver, frequency of care, and specific qualifications needed.

Consider these key areas when assessing needs:

Activities of Daily Living (ADLs)Medical NeedsHousehold Management TasksSafety ConcernsTransportation and MobilityCompanionship Needs

Tip 2: Determine the Type of Caregiver and Frequency Needed

There are three main categories of paid caregivers, each with different training levels and capabilities:

Companion CareCertified Nursing Assistant (CNA)Skilled Nursing

Tip 3: Understand Your Financial Resources

Review Your Financial Resources

Savings and investment accountsLong-term care insurance policiesRegular income sourcesFamily financial contributions.

Explore Available Benefits

MedicareMedicaidVeterans Benefits

Consider Family Contributions

Tip 4: Decide Between Agency or Private Hire

When you work with a caregiving agency:

They Handle Administrative TasksThey Provide Backup CoverageThey Offer Training and SupervisionThey Assume Liability

Private Hire Benefits

It?s Usually Less ExpensiveYou Have Complete ControlThere?s Often More FlexibilityYou May Find Through Word-of-Mouth

Private Hire Challenges

You?re the EmployerNo Backup CoverageLimited Screening Resources

Tip 5: Evaluate potential caregivers thoroughly

Key Questions for Interviews

Scheduling and AvailabilityQualifications and ExperienceApproach to CareCommunication Style

Background Checks and References

Set Clear Expectations

Especially for private hires, establish from the beginning that the arrangement is on a trial basis.

Include Your Loved One When Appropriate

Next Steps: Care Plans and Integration

Develop a written plan Develop an Integration Strategy

Read More in This Blog here 

We don't know what we don't know. But elder law attorneys do, and their expertise can be transformational for families facing aging-related challenges. Whether you're dealing with a recent diagnosis, planning for potential long-term care needs, or simply trying to prepare for the future, understanding how and when to work with an elder law attorney can make all the difference in your journey.

In this episode, we'll explore four essential tips for working with elder law attorneys, based on insights from Beth Prather, a board-certified elder law attorney with 32 years of experience, and Courtney Lovejoy, an elder law attorney with a Master of Laws in elder law. Their expertise in Medicaid planning, VA benefits, estate planning, probate, trust administration, and guardianship offers valuable perspective for anyone navigating the complex legal landscape of aging and caregiving.

Connect with us and share your tips:

Website: https://www.thecaregiversjourney.comDonate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/TheCaregiversJourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Full Show Notes

https://thecaregiversjourney.com/they-know-what-we-dont-elder-law-attorneys-four-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

www.NAELA.org The National Academy of Elder Law Attorneys website has a searchable directory. "They have a really good search function where you can type in your zip code and find elder law attorneys within a certain radius," Courtney notes.State-specific organizations: For example, Florida has the Academy of Florida Elder Law Attorneys (www.AFELA.org).Beth Prather: https://www.gskattorneys.com/attorneys/beth-a-prather/Courtney Lovejoy: https://www.gskattorneys.com/attorneys/courtney-van-emmerik-lovejoy/Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Takeaways

Tip 1: How to Find an Attorney Who Specializes in Elder Law

Finding the right elder law attorney requires more than just a quick Google search. Here's how to identify professionals with genuine expertise in this specialized field:

Look for Specialized Credentials

Professional credentials can be helpful indicators of specialized knowledge in elder law:

Board Certification: IMaster of Laws (LLM) in Elder Law:

Ask the Right Questions

How many Medicaid applications did they file last year?What percentage of their practice focuses on elder law?Do they handle guardianships, Medicaid planning, or VA benefits cases regularly?

Use Reliable Resources to Find Specialists

NAELA.org:State-specific organizations: For example, Florida has the Academy of Florida Elder Law Attorneys (AFELA.org).Personal referrals:

Tip 2: Prioritize These Legal Documents and Planning Tools

Once you've found an elder law attorney, certain planning tools should take priority:

Comprehensive Durable Power of AttorneyConsider Long-Term Care InsuranceLimit or Avoid GiftingAvoid DIY Planning

Common DIY mistakes include:

Adding children to bank accounts or property titlesGiving away assets based on outdated or incorrect adviceTrying to "hide" assets from Medicaid

Tip 3: Understand Medicaid and VA Benefits Options

A significant part of elder law involves helping clients navigate government benefits for long-term care:

Tip 4: Use This Time to Address Other Important Legal Matters

Review Beneficiary DesignationsCreate an Asset InventoryConsider Account ConsolidationAddress Healthcare Decision DocumentsBe Cautious About Adding Others to Accounts or DeedsDiscuss End-of-Life Preferences

When you?re grieving, the last thing you need to be doing is planning a service. Pre-planning allows you to make only two decisions when death occurs: what day and what time the service will be held. Everything else can be arranged in advance, giving you the space to honor your loved one while processing your grief.

We are Sue Ryan and Nancy Treaster, and we recently spoke with Greg Cannon, who has more than 45 years of experience in the funeral profession, including as a funeral director. Greg shared his expertise on planning ahead for a loved one?s service, offering eight essential tips that can make all the difference during a difficult time.

Rate, Subscribe, Share the Podcast and Share Your Tips on Social Media!

Please click here to review, follow, subscribe to and share our podcast.  

Connect with us and share your tips:

Website: https://www.thecaregiversjourney.comInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/TheCaregiversJourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Full Show Notes

https://thecaregiversjourney.com/finding-peace-in-preparation-end-of-life-service-preplanning-eight-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

End of Life Service Worksheet here

Takeaways

Tip 1: Choose a Funeral Home

Select a funeral home that will meet your needs. This choice may be based on location, previous experience with them, or their reputation. 

Tip 2: Decide on Burial or Cremation

This fundamental decision shapes many subsequent choices. 

If choosing burial, consider:

Cemetery locationIf the person is married, reserving an adjoining space for the spouseWhether traditional burial or green burial options are preferred.

For cremation, consider:

Whether the cremation will happen before or after the service.What will be done with the cremated remains afterward.

In both cases, you?ll need to decide what clothing the person will wear. Greg advises bringing a complete set of clothing, including undergarments and outerwear. Shoes are optional and often difficult to put on, but can be included if they?re meaningful.

Tip 3: Decide on the Type of Service

Funeral services have evolved beyond the traditional. 

Traditional Service (for either burial or cremation)

Memorial Service

Green Burial

Direct Cremation or Direct Burial

Tip 4: Choose a Location

The location for the service could be:

A funeral homeA place of worshipA location meaningful to the deceased

Tip 5: Prepare the Obituary

Rather than writing the complete obituary under time pressure, prepare by:

Compiling all necessary information ahead of timeCreating a comprehensive list of family members to includeSelecting a photo or photos to accompany the obituary.

Tip 6: Create a Notification Tree

Decide ahead of time:

Who needs to be notified of the deathWho will notify whomCreate a ?notification tree? so you?re not responsible for contacting everyone.

Tip 7: Plan the Service

Consider these elements and include your care receiver as much as possible:

Officiant: Choose the clergy or person who will lead the serviceEulogies: Decide who will deliver them and provide guidanceMusic: Select meaningful songs or hymnsReadings: Choose scripture, poetry, or other readingsPersonal touches: Include memorabilia, photos, or items that represent the person?s life.

Consider alternatives to traditional floral arrangements:

Family quiltsMeaningful objects (like golf clubs for an avid golfer)Photos.

Tip 8: Plan the Gatherings

Consider various types of gatherings:

Private family dinner before the serviceReception after the service for all attendeesInformal gathering at home with close family and friends.

As caregivers for our loved ones with Alzheimer's and other types of dementia, we've learned that there are many misconceptions about hospice care. Today, we're joined by hospice nurses Nancy Heyerman and Brenda Kizzire to help clarify what hospice really is and when to consider it. Through their extensive experience, they've developed four essential tips to help you navigate this important transition in your caregiving journey.

Connect with us and share your tips:

Website: https://www.thecaregiversjourney.comInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/TheCaregiversJourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Full Show Notes

https://thecaregiversjourney.com/when-to-call-in-hospice-four-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

The Hospice Care Plan website here

Frailty scale here

The Hospice Care Plan booklet here

The Hospice Care Plan YouTube channel here

YouTube video - End of life for a person with dementia here

Takeaways

1. Access Your Care Receiver Using the Frailty Scale

One of the most important tools in determining when hospice might be appropriate is the frailty scale. This helps track changes that might indicate a need for hospice care.

What to Monitor:

- Weight loss patterns

- Ability to feed themselves

- Changes in mobility (e.g., walking distance decreasing)

- Transition from walking to wheelchair

- Changes in activities of daily living

- Increased anxiety or behavioral changes

- Decreased verbal communication

- Mental status changes

2. Start Documenting

This tip might seem obvious, but proper documentation can make a significant difference in getting hospice care approved.

How to Document:

- Keep a calendar with regular weight measurements

- Note changes in mobility and daily activities

- Use your phone to track behavioral changes

- Record any falls or incidents

- Track medication changes and effectiveness

- Document observations from other family members and caregivers

Important Note:

Many primary care providers may not be familiar with the latest hospice criteria. Your documentation helps build a case for hospice evaluation and provides concrete evidence of decline.

3. Research Hospice Organizations 

Don't wait until you're in crisis to start researching hospice organizations. Start your research early and be prepared.

What to Research:

- Available hospice organizations in your area

- Their team structure and approach to care

- Response time for evaluations and care

- Experiences of other families

- Specific services offered

- Their experience with dementia patients

Additional Tips:

- Ask for recommendations from other caregivers

- Read reviews and testimonials

- Consider visiting their facilities if applicable

- Ask about their approach to dementia care

- Understand their after-hours support system

4. Request a Hospice Evaluation

Don't be afraid to ask for a hospice evaluation, even if you're not sure your loved one qualifies.

Steps to Get an Evaluation:

1. Ask your primary care provider for a hospice evaluation

2. If met with resistance, emphasize your goals of care

3. Frame it as establishing a baseline if needed

4. Remember that two physicians must agree - your primary provider and the hospice doctor

5. Be prepared to be a "squeaky wheel" if necessary

The Hospice Care Plan: A Valuable Resource

Nancy and Brenda have created "The Hospice Care Plan: A Path to Comfort," a comprehensive guide that helps families navigate hospice care. This resource includes:

- Detailed symptom management guidelines

- QR codes linking to instructional videos

- Space for individualized care plans

- Information about the hospice team

- Practical tips for daily care

Read More in This Blog here

As caregivers for our loved ones with Alzheimer's and other types of dementia, we often face the challenging question: "Is it time to change my care receiver's living situation?" We are Nancy Treaster and Sue Ryan, and through our experiences, we've developed five essential tips to help you navigate this complex decision-making process.

Connect with us and share your tips:

Website: https://www.thecaregiversjourney.comInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/TheCaregiversJourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Full Show Notes

https://thecaregiversjourney.com/time-for-a-change-home-and-community-living-options-five-essential-tips-alzheimers-and-other-dementias/

Takeaways

1. Understand Your Financial Resources

This foundational step requires a thorough assessment of both current and future financial resources.

Professional Resources to Consult:

- Financial advisors (especially those specializing in senior care)

- Elder care attorneys

- Government program specialists

Income Sources to Consider:

- Care receiver's savings

- Pensions

- Long-term care insurance

- Public health insurance (Medicaid in the US)

- Social Security disability benefits

- Family contributions

Expenses to Evaluate:

- Home modifications

- Safety adjustments

- In-home caregiving costs

- Day program fees

- Potential lost income if reducing work hours

- Care community costs

2. Research Care Options

There are three main categories of care options to evaluate:

Non-Residential Options:

- Respite programs

- Memory cafes

- Day programs

In-Home Options:

- Professional caregiving services

- Government programs (VA benefits, Medicare services)

- Family caregiver arrangements

Care Communities:

- Memory care specific facilities

- Communities with memory care units

- Different care models and staffing levels

- Waiting list considerations

3. Assess Home Safety

This evaluation should include multiple perspectives:

Medical Assessment:

- Get an updated medical evaluation

- Discuss current and future safety risks

- Request occupational therapy assessment

Key Safety Considerations:

- Wandering risk

- Cabinet and door safety

- Mobility challenges

- Fall prevention

- Depth perception issues

- Stairs and accessibility

- Emergency services access

4. Evaluate Medical Needs

Current and Future Medical Considerations:

- Impact of multiple diagnoses

- Care complexity

- Required medical procedures

- Medication management

- Physical care requirements

5. Prioritize Wellbeing for Both Care Receiver and Caregiver

This final tip focuses on quality of life considerations for everyone involved.

Socialization Needs:

- Care receiver's social preferences

- Community engagement opportunities

- Caregiver isolation prevention

- Balance of stimulation and comfort

Safety and Emotional Considerations:

- Physical safety for both parties

- Emotional wellbeing

- Caregiver burnout prevention

- Managing aggressive behaviors

- Personal boundaries

Making the Final Decision:

- Consider all evaluation points

- Involve family members

- Maintain awareness of available options

- Stay connected with potential care communities

- Be prepared to act when needed

When you?re caring for a family member with Alzheimer?s or other type of dementia, you?ve probably heard countless times: ?Don?t forget to take care of yourself.? While well-intentioned, this advice can feel overwhelming when you?re already juggling multiple responsibilities!

Through our conversation with Elizabeth Miller, we?ve learned that effective self-care is about more than just general advice ? it?s about finding practical, sustainable ways to maintain your own wellbeing while caring for others.

Connect with us and share your tips:

Website: https://www.thecaregiversjourney.comInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/TheCaregiversJourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Full Show Notes

https://thecaregiversjourney.com/the-realities-of-caregiver-self-care-four-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

Happy Healthy Caregiver website here 

20 for 2025 Funsheet here

Self-Care at Sea cruise here

Happy Healthy Caregiver podcast here

Just for You daily journal here

Takeaways

Tip 1: Give Yourself Permission

One of the biggest barriers to self-care is the guilt that comes with taking time for yourself. Many caregivers feel it's selfish to focus on their own needs when their care recipient is struggling.

Tip 2: Think Broadly About Self-Care

Self-care encompasses much more than just physical health. Elizabeth identifies eight key categories:

- Practical self-care (like organizing your desk)

- Emotional self-care (therapy, journaling)

- Social self-care (connecting with others)

- Spiritual self-care (following your spiritual path)

- Intellectual self-care (learning new things)

- Financial self-care (budgeting, planning)

- Professional self-care (career development)

- Physical self-care (exercise, nutrition)

Tip 3: Prioritize and Schedule Self-Care

The best self-care strategy is simply putting it on your calendar. Elizabeth recommends creating a "20 for 25" list?twenty things you want to do this year that bring you joy, energy, or peace of mind. These can range from small activities like learning a new game to bigger plans like taking a vacation.

Tip 4: Give Yourself Credit

Instead of focusing solely on to-do lists, create a "ta-da" list celebrating what you're already doing right. Remember that self-care includes basic activities you're already doing:

- Getting sleep

- Preparing meals

- Basic hygiene

- Managing finances

- Taking breaks

Read More in This Blog here

When you?re caring for a family member with Alzheimer?s or another type of dementia, worries can keep you up at night ? but they don?t help you. Through our conversation with Denise Brown, we?ve learned having a solid emergency plan helps calm your worries, reduce your fears, and provide you with peace of mind.

Full Show Notes

https://thecaregiversjourney.com/are-you-ready-for-an-emergency-get-a-plan-four-essential-tips-alzheimers-other-dementias/

Additional Resources Mentioned

Slides used in episode here

Caring Our Way community here

Family Emergency Plan space on Caring Our Way here

Schedule of free planning sessions with consultant here

Takeaways

Tip 1: Name Your Worry

The first step in creating an emergency plan is identifying specific concerns that keep you up at night. Denise's Family Emergency Plan includes eight categories of common caregiver worries:

- Delays

- Health emergencies

- Hospitalizations

- Behavioral challenges

- Transportation issues

- Medication management

- Care coordination

- Communication needs

Tip 2: Develop Your Plan

Once you've identified your concerns, it's time to create actionable plans. Remember that plans can take many forms:

- Written instructions

- Maps or diagrams

- Medication lists

- Contact information

- Behavior management strategies

- Transportation arrangements

Tip 3: Communicate Your Plan

Effective communication ensures everyone involved understands their role. Consider multiple methods of sharing information:

- Written letters or emails

- Shared online documents

- In-person meetings

- Physical copies in accessible locations

- Regular updates and reminders

Tip 4: Update Your Plan Regularly

Emergency plans should evolve as circumstances change. Watch for these common triggers that signal the need for updates:

- Changes in your care recipient's condition

- New diagnoses or medications

- Shifts in your own availability

- Family member changes

- Service provider updates

- Transitions to palliative or hospice care

About Our Guest Expert

Denise Brown founded the Caring Our Way community to support family caregivers. The community offers free resources, including:

- Monthly planning sessions

- Family Care Manager course

- Downloadable planning templates

- Online support spaces

- Access to certified caregiving consultants

You can find these resources at caringourway.com.

Read More in This Blog here

When a parent is diagnosed with Alzheimer?s or another type of dementia and the other parent begins their caregiving journey, the dynamic between the caregiving parent and child shifts dramatically. Through our experiences and conversations with families navigating this transition, we've developed six essential tips to help you support your parent as they take on the role of primary caregiver.

Connect with us and share your tips:

Website: https://www.thecaregiversjourney.comInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/TheCaregiversJourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Full Show Notes

Takeaways

Tip 1: Insert Yourself into the Journey

The first step is making your presence and support known while respecting your parent?s role as primary caregiver.

Key points:

Increase visit frequency or phone callsPosition yourself to observe daily dynamicsAvoid judgment of decisionsListen more than adviseShow support without taking over

Tip 2: Monitor Caregiver Health

Ensuring your caregiving parent maintains their own health is crucial for sustainable care.

Key points:

Ask specific questions that can?t be answered with ?I?m fine?Monitor medical appointmentsDiscuss challenges they?re facingWatch for signs of stress or exhaustionEncourage preventive health care

Tip 3: Provide Emotional Support

Help your parent maintain connections and avoid isolation while caregiving.

Key points:

Listen actively to what?s said and unsaidValidate feelings before offering solutionsMaintain normal conversations beyond caregivingEncourage outside activities and interestsHelp research support resources

Tip 4: Share the Load

Even from a distance, there are many ways to help manage caregiving responsibilities.

Key points:

Handle digital tasks remotelyCoordinate with local friends and familyCreate support networksHelp with scheduling and planning

Tip 5: Participate in Care Details

Get involved in both practical and legal aspects of care management.

Key points:

Obtain necessary legal documents earlySecure medical power of attorneyAddress privacy laws and documentationArrange financial access if neededSupport decision-making processes

Tip 6: Support Through Grief

Grief occurs throughout the journey, not just at its end.

Key points:

Acknowledge ?drip grief? throughout the journeyHelp maintain connections during caregivingSupport through the final transitionAssist with post-care legal mattersBe sure to process your own grief

Special Considerations

When creating support systems:

Develop emergency plans earlyCreate shared care plansDocument important informationKeep contact lists updatedMaintain flexibility in arrangements

About Our Guest Expert

This episode featured Andrew Phipps from Empathy Unbound, who shared his personal experience supporting his father as he cared for Andrew?s mother with dementia. Andrew created Empathy Unbound to promote the idea that empathy is one of our greatest superpowers ? one that we often don?t recognize or use enough.

As Andrew explains, ?The ability to take on the experience or position of another to help understand them is invaluable. Putting ourselves in someone else?s shoes helps us understand their situation in a way we couldn?t otherwise.? You can find the Empathy Unbound podcast wherever you get your podcasts.

Read More in This Blog here

"I discovered a growth on his gum that was only slightly smaller than a marble. That's when I learned dental care involves much more than just brushing teeth."

 

As caregivers for our loved ones with Alzheimer's and other types of dementia, we're continuously learning and adapting our care approaches. Through recent experiences, we've discovered important new aspects of dental care that we believe could help other caregivers on their journey.

Connect with us and share your tips:

Website: https://www.thecaregiversjourney.comInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/TheCaregiversJourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Additional Resources Mentioned

Other episodes mentioned

Episode 15 here

Large cell granuloma picture here

These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you.

Oral swabs hereSuper soft toothbrush hereFresh Breath mouthwash here

Full Show Notes here

?https://thecaregiversjourney.com/dental-care-update-three-new-tips-alzheimers-and-other-dementias/

When your loved one experiences delusions or hallucinations for the first time, it can be frightening and overwhelming for everyone involved. As caregivers for our loved ones with Alzheimer?s and other types of dementia, we've learned how to navigate these challenging moments.

See Full Show Notes here

Connect with us and share your tips:

Website: https://www.thecaregiversjourney.comInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/TheCaregiversJourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Additional Resources Mentioned

These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you.

Electronic medication dispensing and monitoring device for caregiver here

As caregivers for our loved ones with Alzheimer?s and other types of dementia, we often struggle with adapting activities to their changing abilities. Through our experiences, and what we?ve learned from others on their caregiving journeys, Nancy Treaster and I developed three important tips to help you create meaningful engagement that honors who our care receivers are today.

Connect with us and share your tips:

Website: https://www.thecaregiversjourney.comInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/TheCaregiversJourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Additional Resources Mentioned

Other The Caregiver?s Journey podcast mentioned

Home Safety here

These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you.

Large plastic rings child's toy that center screws into base hereAdult coloring book hereDementia friendly puzzle hereLavender lotion hereBead maze hereFidget blanket herePhoto giftsShutterfly hereMemory Cafe example here

Takeaways

From the moment of diagnosis, we need to shift our focus from what our care receivers used to do to what brings them joy now. 

Tip 1: Adjust Our Expectations

Our care receivers? engagement and abilities change throughout their journey ? even throughout each day. 

Key points:

Let go of ?before? comparisonsLet go of outcomesWatch for signs of enjoyment or frustrationPay attention to new interestsAdapt activities to current abilitiesAccept different ways of engaging

Tip 2: Prioritize Their Safety

As we introduce or adapt activities, safety must be a primary concern, considering both cognitive and physical abilities.

Key points:

Consider vision changes and depth perception challengesAdapt activities to safely maintain independenceProvide appropriate supervision and get creative in places to find itMake creative adjustments to familiar activitiesCreate support networks for safety

Tip 3: Create Engaging Activities

Create activities to reflect their personal history, career, hobbies and interests, while engaging their senses. Whenever possible, engage multiple senses for a deeper connection and engagement.

Key points:

Engage their senses:? Touch (e.g.: fidget blankets, textured items)? Sound (e.g.: familiar music, calming sounds)? Smell (e.g.: familiar scents, cooking aromas)? Sight (e.g.: colorful objects, family photos)? Movement (e.g.: seated dancing, simple exercises)Create social connections through:? Small group activities? Religious or spiritual practices? Memory cafes? Senior center programs? Family gatherings

When planning activities:

Observe body language for signs of engagement or distressHave backup calming activities ready if they get agitatedRemember that watching can be a form of participationConsider ?drip grief? (see bottom of post for definition) ? both yours and theirsBe flexible and creative in your approachAccept help from others who want to support you

Read Full Blog here

"If you give me a spa certificate but no gift of time to go with it, I'll probably never use it."

As friends and family of Alzheimer?s and other dementia family caregivers, we want to give meaningful gifts that will actually be used and appreciated. Through our experiences and what we've learned from others on their caregiving journeys, we've developed five important categories of gifts that truly make a difference in a caregiver's life.

See Full Show Notes here

Rate, Subscribe and Share Your Tips on Social Media!

Please click here to review, follow or subscribe to our podcast.  

If you don?t see your preferred platform click on Podchaser and click at the bottom ?Write my review?

You can log in with Twitter, Facebook or GoogleOn the right you?ll see a box with ?Follow?, ?Rate and Review? and ?Share? 

Connect with us and share your tips:

Website: https://www.thecaregiversjourney.comInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/TheCaregiversJourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Additional Resources Mentioned

These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you.

Begin your self-care journey guide hereScented soap Herbaria - here Sue?s favorite popcorn hereCare support coordinationMealtrain.com hereCaringbridge.com herePhoto giftsShutterfly here

"I wish I had started monitoring my husband's medication sooner than I did."

As caregivers for our loved ones with Alzheimer's and other types of dementia, we've learned that medication management becomes increasingly challenging. Through our experiences, and what we've learned from support groups and others on their journeys, we've developed four important tips to help you support your care receiver with medication management.

See Full Show Notes here

Rate, Subscribe and Share Your Tips on Social Media!

Please click here to review, follow or subscribe to our podcast.  

If you don?t see your preferred platform click on Podchaser and click at the bottom ?Write my review?

You can log in with Twitter, Facebook or GoogleOn the right you?ll see a box with ?Follow?, ?Rate and Review? and ?Share? 

Connect with us and share your tips:

Website: https://www.thecaregiversjourney.comInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/TheCaregiversJourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Additional Resources Mentioned

These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you.

Electronic medication dispensing and monitoring device for caregiver here

?We?ve both had ?that? trip ? the last trip that you take when you decide we?re not traveling ever again with our care receiver. Or, as we like to say, it?s the trip after the last trip you should have taken!?

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer?s and other types of dementia, we?ve learned travel decisions require careful consideration. Through our experiences, and what we?ve learned from support groups and others on their journeys, we?ve developed four important tips to help you decide whether you and your care receiver should stay home or go on what could be ?that? trip.

See Full Show Notes here 

Rate, Subscribe and Share Your Tips on Social Media!

Please click here to review, follow or subscribe to our podcast.  

If you don?t see your preferred platform click on Podchaser and click at the bottom ?Write my review?

You can log in with Twitter, Facebook or GoogleOn the right you?ll see a box with ?Follow?, ?Rate and Review? and ?Share? 

Connect with us and share your tips:

Website: https://www.thecaregiversjourney.comInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/TheCaregiversJourneys/Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/Email: [email protected], [email protected]

Additional Resources Mentioned

These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you.

Fidget blanket here

Takeaways

Tip 1: Pre-test Travel Readiness

Key points:

Test longer car rides (at least an hour round trip)Try interstate driving if that will be part of your journeyExperience crowds and noise if those will be presentTest unfamiliar environmentsPay attention to any existing signs of travel difficulty.

Tip 2: Evaluate All Trip Components

Key points:

Assess sleeping arrangements and bathroom accessibilityConsider the need for quiet spaceEvaluate support options at the destinationThink about familiarity with locationsListen to your inner voice about the decision ? is this the wisest choice?

Tip 3: Plan Comprehensively

Key points:

Minimize advance information to avoid overwhelming your care receiver.Pack comfort items: Fidget blanketsFamiliar snacksFavorite music and headphonesPhoto booksFamiliar entertainment (DVDs, etc.)

3. Plan around normal routines:

Meal timesSleep scheduleBest times of day for different amounts of activity

4. Prepare for emergencies:

Take IDs and insurance cardsBring extra medicationsPack legal documentsConsider anti-anxiety medication optionsShare detailed itinerary with family membersHave your emergency contact information easy to find on your care receiver and in case something happens to you.

Tip 4: Prepare Others

Key points:

Explain current abilities and challengesProvide conversation guidanceDemonstrate proper approach techniquesGive permission for others to opt out if they?re not comfortableShow grace toward those processing their own emotions

Read More in This Blog here

The moment you realize your loved one with dementia is missing, every second feels critical. While the natural instinct is to immediately begin searching, having a clear action plan can make the difference in finding them quickly and safely. Through insights from John Clark, a specialized dementia search and rescue expert in Georgia, we've compiled three essential tips for these frightening situations.

Additional Resources Mentioned

Georgia Emergency Search and Rescue

John Clark USA 404-309-7386

[email protected]

Professionally Trained in Urban Searches

Alzheimers, Dementia, Children, Evidence Recovery, Major Disaster Search, NASAR, Disaster Assistance

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You can log in with Twitter, Facebook or GoogleOn the right you?ll see a box with ?Follow?, ?Rate and Review? and ?Share? 

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Takeaways

Tip 1: Make the Right First Move

Key points:

Call emergency services immediately, before starting your own searchDon't wait to make the call while searching on your ownAsk if there are dementia-specialized search teams in your areaRemember that it's okay to search after making the call

Tip 2: Provide Critical Information to Searchers

Key preparation points:

Keep current photos readily available:

Essential information to share:

Recent conversations and topics they've discussedTheir maiden name or previous namesNicknames family members useCommon walking routes or regular destinationsNearby water sources (pools, ponds, lakes)Places from their past they might seek outTheir current stage in their dementia journeyRecent behaviors or patternsCurrent medications

Tip 3: Know What to Expect After They're Found

Standard procedures:

Medical evaluation is typicalTransportation to hospital via ambulance or police carAssessment for any injuries or exposure

For More Read Full Blog here

Building Better Local Resources

Not every community has specialized dementia search and rescue teams, but there are ways to improve local capabilities:

Steps to take:

Contact your local Alzheimer's Association chapterAsk about existing specialized search resourcesInquire about training opportunities for local emergency servicesAdvocate for specialized training in your communityNetwork with other caregivers to share experiences and resources

Note: If you're in Georgia, specialized dementia search and rescue services are available. Contact your local emergency services or Alzheimer's Association chapter for more information.

The secret to successful holiday celebrations with our dementia care receivers isn't perfect decorations or parties?it's having a peaceful retreat space ready for them when needed.

As caregivers navigating the holiday season with loved ones who have Alzheimer's and other types of dementia, we've learned that intentional planning makes all the difference. The holiday season brings additional activities, decorations, and visitors that can disrupt the routines so vital to our care receivers' well-being. Success requires careful observation, thoughtful preparation, and gradual adaptation of celebrations.

Through our experiences, what we've learned from support groups, and from others on their journeys, we've developed five essential tips to help create positive holiday experiences while maintaining the calm and familiar environment your care receiver needs.

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Takeaways

Tip 1: Preserve Daily Routines

The holidays and routines might share the same number of letters, but that's where their similarities end. While the season pulls us toward special events and gathering, we must remember that routines are the cornerstone of stability for our care receivers. These familiar patterns aren't just habits?they're vital anchors that help our loved ones navigate their days with confidence and security.

Tip 2: Be Prepared With a Calm Retreat Space

In the midst of holiday celebrations, having a sanctuary becomes essential. Think of this space as your loved one's personal haven?a place where the overwhelming stimuli of holiday gatherings can't reach. Just as we all need a quiet moment sometimes, our care receivers often require a calm, familiar space where they can retreat and regroup when festivities become too much.

Tip 3: Set Expectations With Visitors While Also Acknowledging Their Feelings

The holiday season often brings an increase in visitors, each carrying their own expectations and memories of past celebrations. While these visits can be precious opportunities for connection, they require careful management to ensure everyone's comfort?especially our care receivers. Understanding and communicating about the current reality of your loved one's condition helps create more meaningful interactions and minimize uncomfortable situations.

Tip 4: Teach Visitors How To Visit

Creating successful visits is about helping others understand how to connect with your care receiver in their current reality. As their ability to process information changes, the ways others can best interact with them evolves too. 

Tip 5: Introduce Changes Gradually

The magic of holiday decorations and traditions can quickly become overwhelming for someone with dementia. What once brought joy might now cause confusion or distress. This doesn't mean we must abandon all holiday cheer?rather, we need to be thoughtful about how we introduce these changes to our environment. Think of it as slowly turning up the dimmer switch rather than flipping on bright lights all at once.

As caregivers for our loved ones with Alzheimer's and other types of dementia, we've learned eating and drinking become significant challenges. Through our experiences, and what we've learned from support groups and others on their journeys, we've developed seven important tips to help you and your care receiver navigate dining.

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Additional Resources Mentioned

Episode 13 - Incontinence Overnight here 

These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you.

Bibs here Spork here Lowbowls hereGrippy placemats here Other great caregiver dining aid products here

Takeaways

Tip 1: Observe Their Natural Eating Habits

Observe and record how they naturally eat and drink (e.g., time of day, order, how they cut their food, which hand they use for each utensil).Continuously observe, adjust, and share with others who are helping your care receiver with their eating and drinking. 

Tip 2: Utilize Pre-made Meals and Visual Cues

Leave pre-made meals in easily accessible places (e.g., eye-level in the refrigerator).Use visual cues like notes on the refrigerator or preset table settings with a note where the plate will go that tells your care receiver where the meal is.Check to make sure they have actually eaten their food and finished what they had to drink so you know if they?re able to understand what to do.

Tip 3: Pre-cut Food, Adjust Portions, Observe How They?re Able to Eat and Drink

Pre-cut food into manageable pieces.Consider converting sandwiches and other foods into finger foods.Be aware of changes in hand stability, grip strength, vision, and coordination.Some people with dementia diagnoses lose regulation with their appetite. It?s important for us to observe how they?re eating and the portions they?re eating to make sure they?re getting the proper amount of food. Introduce non-breakable drinkware, consider tops or adult sippy cups. 

Tip 4: Prepare for Messier Eating

Consider using regular bibs or large disposable bibs Place a towel on the chair to catch spills.Keep a basket of cleaning supplies (e.g. paper towels, hand wipes, table wipes) handy for quick clean-ups.

Tip 5: Simplify Eating Utensils and Tableware

Low bowls with a slight rim make it easier to push food onto utensilsSporks combine the functions of spoons and forks, so one utensil can be used.Grippy placemats keep plates from sliding.

Tip 6: Monitor and Adjust Nutrition

Watch for unexplained weight loss or gain.Consult with doctors if you notice sudden changes.If you move your care receiver to a memory care community, develop nutrition plans and weight monitoring processes and stay actively engaged with them. 

Tip 7: Gradually Take Over Feeding and Hydration

Position yourself closer to them at mealtimes to make assistance easier.What begins as prompting them to eat or drink and gradually increases to handing them their utensils and/or putting food on their utensils, showing them their drinking glass becomes modifying their drinking glass to make it easier for them to use, to eventually fully feeding them and controlling their beverages.

Read More in This Blog here

See full show notes here

As caregivers for our loved ones with Alzheimer's and other types of dementia, we've learned that shaving, trimming nails, brushing teeth and trimming hair - what we?re calling personal care - can become challenging. These challenges often arise around the same time as bathing and dressing difficulties. How we provide support for our loved one will vary based on whether they stay at home during their journey or move into a care community. Not surprisingly, personal care is an area where many tips can be provided! 

Through our experiences, what we've learned from support groups, and others on their journeys, we've developed four initial areas of tips to help you and your care receiver with their personal care.

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Additional Resources Mentioned

These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you.

Electric razorFor men hereFor women hereOral swabs hereSuper soft toothbrush hereFresh Breath mouthwash hereElectric hair trimmers here

Full Show Notes https://thecaregiversjourney.com/personal-care-four-essential-tips-alzheimers-and-other-dementias/

Takeaways

Understanding Personal Care Challenges in Dementia Care

Tip 1: Mastering the Art of Shaving

Transition to an electric razor as early as possible. 

Begin your support by prompting and supervising, gradually inserting yourself into the process.Try shaving when your care receiver is calm, possibly after meals or during naps.Aim to shave men's facial hair at least every other day to prevent discomfort from longer hair. For women, transition to electric razors for safety. Women also tend to become comfortable with letting their body hair grow.As early in their diagnosis as possible, get a thorough dental examination. If there is any dental work that's important to be completed, do it while they still understand and can participate.Consider transitioning to a dentist specializing in disabilities.If possible increase dental visits to every three months.Start by reminding your care receiver and supervising their tooth brushing.Gradually take over the process?-?for example, begin by handing them their toothbrush, transition to handing them their toothbrush with toothpaste on it, then transition to beginning to brush their teeth.Use a soft-bristled toothbrush and less toothpaste to prevent swallowing.Consider using disposable oral swabs with mouthwash for additional cleaning.

Tip 4: Hair Care and Trimming

Take photos of the hair style your loved one has.If they color their hair, talk about keeping it colored or letting it become their natural color.There are hair stylists who will come to your home instead of you having to go into a salon. Consider transitioning to easier-to-manage hairstyles.Learn basic haircutting techniques or ask their stylist to teach you.For women, longer hair in a soft bun might be easier than short styles.Personal care trimmers are very helpful for both men and women for eyebrows, hair in the ears and nose.

Read More in This Blog here

As caregivers for our loved ones with Alzheimer's and other types of dementia, we've learned bathing and dressing can become significant challenges. These activities are often early signs of transitioning from the initial phase of the caregiving journey where we?re simply prompting and helping them, to what we call the "messy middle?, when we begin asserting more control. We are Nancy Treaster and Sue Ryan. Through our experiences, what we've learned from support groups, and others on their journeys, we've developed four important tips to help you navigate bathing and dressing for your care receiver.

Takeaways

Here are four tips to help you navigate this phase:

Tip 1: Simplify Instructions

As the journey progresses, your care receiver may begin struggling with multi-step instructions.

Start giving one instruction at a time.

Break down their tasks into smaller steps.

Consider adaptive clothing options.

Tip 2: Gradually Insert Yourself into the Process

As their challenges increase, it?s time to become more involved in their bathing and dressing process.

From early in their journey, if you haven?t already learned their natural bathing and dressing routines, observe and note them. 

Prompt or assist them in their routine order.

Set up the bathroom to make it as easy for them as possible to bathe (if you normally keep everything put away, put the items out where they can see everything they?ll need), 

Put their clothing out. (Tip: When I began putting my husband?s clothing out, I began putting my clothing out as well, explaining to him I had heard this was a great tip to simplify dressing, and wanted to try it myself.) This helps maintain their dignity. 

Prepare everything needed for their bathing and dressing in advance.

Consider marking the preferred shower temperature on the faucet.

Tip 3: Transition to Sponge Baths

At some point, traditional showers or baths may become too challenging or stressful.

Use non-rinse bathing wipes for body cleansing.

Try non-rinse shampoo caps for hair washing.

For facial cleansing, consider products like Burt's Bees Micellar Water.

Maintain a regular schedule of cleaning, even if it's not a full bath every day.

Tip 4: Assist with the Dressing Process

As with bathing, dressing will require more assistance over time.

- Transition to adaptive clothing when appropriate, especially if incontinence becomes an issue.

- Ensure safety during the dressing process (e.g., have them seated when putting on socks).

- Be attentive to their comfort, including temperature preferences.

- Encourage participation in the process as much as possible.

Read More in This Blog here

Additional Resources Mentioned

Episode 11 - Cleaning Your Care Receiver here

These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you.

Adaptive clothingShorts snap up herePants snap up hereVery nice adaptive clothing here Disposable incontinence underwearFor women hereFor men hereAdult washcloths/wipes hereNo-rinse bathing wipes hereNo-rinse shampoo caps here

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You can log in with Twitter, Facebook or GoogleOn the right you?ll see a box with ?Follow?, ?Rate and Review? and ?Share? 

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As caregivers for our loved ones with Alzheimer's and other types of dementia, we've learned overnight incontinence is one of the most challenging aspects of the journey. It's not a topic often discussed, yet it's a reality for us to face with compassion, dignity, and preparation. We are Nancy Treaster and Sue Ryan. Through our experiences, we've developed four important tips to help you navigate overnight incontinence in your caregiving journey.

Takeaways

Overnight incontinence can be particularly challenging because it affects the sleep of both the care receiver and the caregiver.

It often requires a balance between managing a mess and getting necessary rest.

This stage can be an inflection point in the caregiving journey, potentially requiring additional help or considering moving your loved one into a care community.

Here are four tips to help you navigate this challenging phase:

 

Tip 1: Transition to Nighttime and ultimately Disposable Incontinence Underwear

 

It's important to ensure your care receiver has appropriate protection overnight.

 

Tip 2: Protect the Mattress

 

Accidents will happen, so it's important to protect the bed.

 

Tip 3: Make the Bathroom Easy to Find

 

Help your care receiver locate the bathroom easily if they wake up during the night. We cover this in detail in podcast episode 9 Preparing for Incontinence.

 

Tip 4: Keep Your Care Receiver Comfortable Overnight

 

As incontinence progresses, it becomes important to take additional steps to ensure comfort.

Navigating overnight incontinence in Alzheimer's and dementia care is challenging in the beginning as you?re both adapting. With patience, curiosity, compassion, preparation and the right mindset, it can be manageable.

 

Key points:

 

Transition to appropriate nighttime protection.Protect the mattress and be prepared for frequent sheet changes.Make the bathroom easy to find.Keep your care receiver as comfortable as possible overnight.Consider a mid-night change if possible.Maintain hydration but manage fluid intake timing.

Blog here

Additional Resources Mentioned

Episode 4 - Wandering hereEpisode 10 - Incontinence Begins hereChild proof door knob cover or double deadbolt locks for external doorsChild proof door knob covers hereExtra tall pet gate from (40? to 70?) - 57? helpDisposable incontinence underwearFor women hereFor men herePadsMattress pads34?x36? here72?X36? hereDisposable incontinence pads hereBrown large pet pee pads hereMattress bag herePeelaways hereCameras or baby monitor for the bedroom and bathroomBaby monitors - some come with motion alarms hereMotion alarm hereCameras - If your care receiver is still staying home alone, consider one with an intercomRing indoor with two-way talk hereWashable incontinence underwear For womenColors hereCream hereFor men Briefs hereBoxer briefs hereDisposable incontinence underwearFor women hereFor men hereDisposable incontinence underwear guards For men hereFor women hereAdult washcloths/wipes hereDisposable incontinence pads hereRound tipped scissors here

Rate, Subscribe and Share Your Tips on Social Media!

Thanks for listening! If you enjoyed this episode, please leave a review and subscribe on your favorite podcast platform.

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As caregivers for our loved ones with Alzheimer?s and other types of dementia, we?ve learned that full incontinence is an inevitable part of our journey. It?s a topic not often discussed, yet it?s a reality for us to navigate with compassion, dignity, and preparation???for both us and our care receiver. We are Nancy Treaster and Sue Ryan. Through our experiences, we?ve developed 2 valuable tips to help you navigate bowel and bedbound incontinence in your caregiving journey.

Watch Bowel and Bedbound Incontinence: Two Essential Topics / Alzheimer?s and Other Dementias

https://youtu.be/PD4zOctyfPw

Takeaways

Read More in This Blog here

Additional Resources Mentioned

Episode 10 - Incontinence Begins hereEpisode 11 - Cleaning Your Care Receiver hereChanging a bedbound care receiver YouTube video here Changing a Depend with a bowel movement hereDisposable incontinence underwearFor women hereFor men hereWheels for bedBed with railsWedge pillowAdaptive clothingShorts snap up herePants snap up hereVery nice adaptive clothing here Non-rinse bathing wipes hereAdult washcloths/wipes hereDisposable incontinence pads hereRound tipped scissors hereScented small trash can liner hereAdult incontinence can here

Rate, Subscribe and Share Your Tips on Social Media!

Thanks for listening! If you enjoyed this episode, please leave a review and subscribe on your favorite podcast platform.

Please click here to review, follow or subscribe to our podcast.  

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As caregivers for our loved ones with Alzheimer?s and other types of dementia, we?ve learned managing incontinence is one of the most challenging aspects of our journey. It?s a topic where having detailed information is vital to our adjusting to this part of our journey mentally, physically, and emotionally.

We are Nancy Treaster and Sue Ryan. Through our experiences, and insights we?ve learned from others in support groups, we?ve developed three indispensable tips to help you navigate the important component of incontinence care with your care receiver ? cleaning them

Takeaways here

Additional Resources Mentioned

Episode 10 - Incontinence Begins hereEpisode 12 - Bedbound and Bowel Incontinence hereEpisode 13 - Incontinence Overnight hereAdaptive clothingShorts snap up herePants snap up hereVery nice adaptive clothing here Disposable incontinence underwearFor women hereFor men hereAdult washcloths/wipes hereNon-rinse bathing wipes hereDisposable incontinence pads hereRound tipped scissors here

Rate, Subscribe and Share Your Tips on Social Media!

Thanks for listening! If you enjoyed this episode, please leave a review and subscribe on your favorite podcast platform.

Please click here to review, follow or subscribe to our podcast.  

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You can log in with Twitter, Facebook or GoogleOn the right you?ll see a box with ?Follow?, ?Rate and Review? and ?Share? 

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Who knew that understanding the stages of incontinence could make such a difference in our caregiving journey? As caregivers for our loved ones with Alzheimer?s and other types of dementia, we?ve learned incontinence is an inevitable - and can be - a challenging part of our journey. It?s a reality and a topic that?s not often discussed. It?s helpful for us to be prepared to navigate incontinence with compassion, dignity, and grace for our care receivers and for us. We are Nancy Treaster and Sue Ryan. Through our experiences, we?ve developed four tips to help you navigate the pre-incontinence and early incontinence phases on your caregiving journey.

Takeaways

Before we introduce your tips, it?s helpful to understand what we mean by ?pre-incontinence? and ?early incontinence?.

Pre-Incontinence

This is the phase before actual incontinence begins, when our care receiver is showing signs incontinence may be on the horizon. 

Signs include:

Using the trash can instead of the toilet for toilet paperNot flushing the toiletResisting drinking to avoid bathroom tripsLooking around anxiously (potentially for a bathroom)

Early Incontinence

When actual incontinence begins, it usually starts with urinary incontinence. Your loved one may still be trying to find the bathroom but often doesn?t make it in time.

Signs include:

Not getting to the bathroom fast enoughHolding their stomach, bottom, or between their legs

Tip 1. Make it Easy to Find the Bathroom

Yes, to us this sounds simple. To our loved one, they are disconnecting with the signs their bodies are telling them they need to go, and the steps to use the bathroom. One of the most effective ways to support your loved one during pre-incontinence and early incontinence is by making the bathroom as accessible and easy to find as possible.

Tip 2. Schedule Bathroom Breaks

Establishing a consistent bathroom routine can significantly reduce accidents and make the transition into full incontinence more manageable.

Tip 3. Simplify Cleanup

As incontinence progresses, accidents will happen. Being prepared can make cleanup easier and less stressful for both you and your loved one.

Tip 4. Think Positively and Have Lots of Grace

Perhaps the most important tip of all is to maintain a positive attitude and extend grace to both you and your loved one.

Read More in This Blog here

Additional Resources Mentioned

Episode 11 - Cleaning Your Care Receiver here

These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you.

Child proof door knob cover or double deadbolt locks for external doorsChild proof door knob covers hereExtra tall pet gate from (40? to 70?) - 57? hereDisposable incontinence underwearFor women hereFor men herePadsMattress pads34?x36? here72?X36? hereDisposable incontinence pads hereBrown large pet pee pads hereEasy mopsSwiffer mop hereBona hereHard surface cleanersPine Sol herePooph hereOdoban hereFabuloso hereCarpet cleaningResolve Urine Destroyer hereResolve Ultra Pet hereBissell Pet Carpet Cleaner hereResolve Urine Destroyer Carpet Cleaning Machine Formula here

Rate, Subscribe and Share Your Tips on Social Media!

Thanks for listening! If you enjoyed this episode, please leave a review and subscribe on your favorite podcast platform.

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Description

Who knew being prepared could make such a difference in managing incontinence? Incontinence can be one of the most difficult areas of our caregiving journeys. It?s personal. It?s awkward. It?s rarely something discussed ? by anyone ? making it potentially uncomfortable to talk about. It?s also one of the most important areas to navigate with compassion and dignity ? for us and for our care receiver. Early preparation is essential. This is your moment of truth as a caregiver. Ask yourself: Can I handle this physically? Mentally? Emotionally? And if so, how? The good news is, you?ve got time to think it through, talk with others, and make smart decisions. Use this runway wisely ? your future self will thank you. We are Nancy Treaster and Sue Ryan ? we?ve faced incontinence care head-on. Trust us, it?s better to think about this now or you?ll wish you had. There?s a lot going on with incontinence! In this episode, we?re sharing four game-changing tips to help you be prepared.

Takeaways

For takeaways click here 

Additional Resources Mentioned

Episode 11 - Cleaning Your Care Receiver here

These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you.

Washable incontinence underwear For womenColors hereCream hereFor men Briefs hereBoxer briefs hereDisposable incontinence underwearFor women hereFor men here

Rate, subscribe and share your tips on social media!

Please click here to review, follow or subscribe to our podcast.  

If you don?t see your preferred platform, click on Podchaser and click at the bottom ?Write my review?

Connect with us and share your tips:

Website: https://www.thecaregiversjourney.comInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/TheCaregiversJourneys/Email: [email protected], [email protected]

Keywords

Preparing for incontinence, Boundaries, Alzheimer's, dementia, caregiver, caregiving, dementia care, memory care, dementia caregiver blog, Alzheimer's blog, caregiver blog, senior caregiver blog, dementia caregiver tips, how to care for someone with dementia living alone, information on dementia for caregivers, how to be a caregiver for someone with dementia, family caregiver, frontotemporal dementia, dementia caregiver tips, family caregiver, Sue Ryan, Nancy Treaster, Susan J Ryan

 

Description

When a close family member is diagnosed with dementia, it can be uniquely challenging for young adults to navigate this new reality. We are Nancy and Merritt Treaster. When Merritt was in his early twenties, his dad, who was 60 at the time, was diagnosed with Frontotemporal dementia. A few short years later, his grandfather, at the age of 85, was diagnosed with Alzheimer?s disease. Merritt?s experiences led us to create this episode to help other young adults. He has distilled his thoughts on how to be better prepared into four essential tips for young adults facing a family member?s dementia diagnosis.

Takeaways

For takeaways click here

Rate, subscribe and share your tips on social media!

Please click here to review, follow or subscribe to our podcast.  

If you don?t see your preferred platform, click on Podchaser and click at the bottom ?Write my review?

Connect with us and share your tips:

Website: https://www.thecaregiversjourney.comInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/TheCaregiversJourneys/Email: [email protected], [email protected]

Keywords

Young adult, teenager, boundaries, incontinence, Alzheimer's, dementia, caregiver, caregiving, dementia care, memory care, dementia caregiver blog, Alzheimer's blog, caregiver blog, senior caregiver blog, dementia caregiver tips, how to care for someone with dementia living alone, information on dementia for caregivers, how to be a caregiver for someone with dementia, family caregiver, frontotemporal dementia, dementia caregiver tips, family caregiver, Sue Ryan, Nancy Treaster, Susan J Ryan, Merritt Treaster

 

You?re going to wish you?d known about padding hard corners earlier in your caregiving journey!

We are Nancy Treaster and Sue Ryan. Through our experiences as caregivers for our family members and loved ones with Alzheimer?s and other types of dementia, we?ve learned ensuring home safety is both vitally important and ever-changing.

In this post, we?re sharing three main tips for managing safety???both inside and outside the home. These help you keep your loved one safe while giving you peace of mind.

Takeaways

Practical Tips

Tip 1: Create a File of Life

One of the most effective ways to keep your loved one safe is by creating a document called File of Life. File of Life was created to give first responders valuable medical and personal information when the people they?re helping can?t.

The valuable information this File of Life document contains about your care receiver includes:

Tip 2: Care Receiver proof Your Home

As your loved one becomes more curious and restless, it?s time to care receiver proof your home. This process is ongoing ? observe and adjust as needed. It?s most likely still hard for us to know what they can and can?t remember. We?re so used to them being able to think rationally, it can be a hard transition to using the position they can?t.

For those of you who have raised children, it?s the same kind of process ? they?re curious, you don?t know what they?ll explore, and they don?t yet know what is safe or dangerous.

Tip 3: Minimize Fall Risks

Falling is unfortunately inevitable. Here are steps you can take to minimize risks and impact.

Pad corners and edges of furnitureRemove area rugs to prevent trippingCheck floors for any loose or risen cornersUse fall tracking devices (wristbands, shoe inserts, phone apps)Improve lighting to reduce shadowsMake shower entry safer (if you have a combination tub/shower ? replace it with a shower only and install one without a lip on the floor they could trip on)Grip socks and non-slip shoesBe prepared for falls with tools like a floor lift chairInstall cameras so you can watch their movements

For takeaways click here

Additional Resources Mentioned

File of Life: Create a document called File of Life.Child proof door knob cover or double deadbolt locks for external doorsChild proof door knob covers hereDouble keyed deadbolt hereWindow sash here Child proof cabinet locks hereChild proof stove knob covers hereChild proof refrigerator latch hereChild proof switch plate for garbage disposal hereExtra tall pet gate from (40? to 70?) - 57? hereChild padding foam hereCameras or baby monitor for the bedroom and bathroomBaby monitors - some come with motion alarms hereMotion alarm hereCameras - If your care receiver is still staying home alone, consider one with an intercomRing indoor with two-way talk hereGrip Socks hereFloor lift chairsIndeelift hereGeneric floor lift chair here 

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Website: https://www.thecaregiversjourney.comInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/TheCaregiversJourneys/Email: [email protected], [email protected]

Keywords

Home safety, child proof, dementia proof, reduce falls, Alzheimers, dementia, caregiver, caregiving, Alzheimers care, dementia care, memory care, best dementia podcast, alzheirmers podcast, caregiver podcast, dementia caregiver podcast, dementia podcast, alzheimers podcast, caregiver podcast, senior caregiver podcast, dementia caregiver tips, frontotemporal dementia, dementia caregiver tips, how to deal with dementia as a caregiver, information on dementia for caregivers, how to be a caregiver for someone with dementia, family caregiver, Sue Ryan, Nancy Treaster, Susan J Ryan

If your loved one can?t do three of the things we discuss in this episode, they should not be home alone. As caregivers for our husbands, parents, and other loved ones with Alzheimer?s and other types of dementia, we both know that one of the early goals for our loved one is to help them maintain their independence as long as it's reasonable. You?ll be balancing your concern for their safety with their independence, remembering their ability to stay home alone is temporary. We are Sue Ryan and Nancy Treaster, and through our experiences, we're sharing six key tips for supporting your loved one's ability to be home alone.

Show Notes

https://sueryansolutions.medium.com/leaving-your-loved-one-at-home-alone-six-essential-tips-b46fc1b6a1ef

Related episodes

Episode #7 Care Receiver Home Safety / Alzheimer?s and Other Dementias 

https://youtu.be/dFlZXGn4r9k

Additional Resources Mentioned

These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you.

Audit for home listLaundry: Ability to wash, dry, and put away clothesHome cleaning: Bathroom cleanliness, safe use of cleaning productsPersonal hygiene - Bathing safety, overall cleanliness  Safety with appliances and equipment: Proper use of kitchen appliances Locking and unlocking doors: Security awarenessHome safety: Identifying and removing fall risks (rugs, furniture placement)Temperature control: Appropriate use of thermostat, pre-program and cover over it, control through app. Thermostat control Control through appI use my Nest for this as well and have it on the same app as the cameras hereAmazon product works with Ring hereThermostat cover hereElectronic medication dispensing and monitoring device for caregiver hereInside and outdoor cameras Cameras with an intercomRing indoor with two-way talk hereRing outdoor with two-way talk hereTracking devices for their personApple Airtag hereSamsung SmartTag - hereShoes AirTag hereShoes generic hereWatch here

Rate, subscribe and share your tips on social media!

Please click here to review, follow or subscribe to our podcast.  

If you don?t see your preferred platform, click on Podchaser and click at the bottom ?Write my review?

Connect with us and share your tips:

Website: https://www.thecaregiversjourney.comInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/TheCaregiversJourneys/Email: [email protected], [email protected]

If you can successfully leverage tip one in this episode you will have an easy path to taking away the car keys. As caregivers for our husbands, parents, and other loved ones with Alzheimer?s and other types of dementia, we both learned that taking away the car keys can be a sensitive and important issue to address. In the beginning stages of dementia, our primary goal is to balance safety with our care receivers' desire for independence. We are Sue Ryan and Nancy Treaster, and through our experiences, we're offering four key tips.

Show Notes

Takeaways

We offer four tips to help you.

Tip 1: Understand Legal and Insurance Considerations

One of the most effective ways to approach the driving issue is to familiarize yourself with the legal and insurance implications in your area. This involves researching local laws and understanding the potential consequences of allowing someone with dementia to continue driving.

Tip 2: Implement Tracking Measures

For those in the early stages of dementia who are still able to drive safely, tracking can provide peace of mind for caregivers while allowing the care receiver to maintain some independence.

Tip 3: Gradual Transition: Riding Along and Taking Over

As dementia progresses, it's helpful to start riding along frequently and gradually take over driving responsibilities.

Tip 4: Removing Driving Completely

Sometimes, for safety reasons, we need to take more decisive action to prevent our loved ones from driving.

Additional Resources Mentioned

State laws on dementiaWe found this state by state summary online but can?t vouch for the source.  https://www.dementiacarecentral.com/caregiverinfo/driving-problems/#state-lawsCheck you state or country law specifically by searching like this i the US ?state name law driving with dementia?

These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you.

Tracker for their carApple Airtag hereSamsung SmartTag - hereTracking device for their car with speed detection etc ? hereTracking device for their personApple Airtag hereSamsung SmartTag - hereShoes AirTag hereShoes generic hereWatch here

Rate, subscribe and share your tips on social media!

Thanks for listening! If you enjoyed this episode, please leave a review and subscribe on your favorite podcast platform.

Please click here to review, follow or subscribe to our podcast.  

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Connect with us and share your tips:

Website: https://www.thecaregiversjourney.comInstagram: https://www.instagram.com/thecaregiversjourney/Facebook: https://www.facebook.com/TheCaregiversJourneys/Email: [email protected], [email protected]

Keywords

Alzheimers, dementia, caregiver, caregiving, Alzheimers care, dementia care, memory care, best dementia podcast, best alzheirmers podcast, best caregiver podcast, best caregiving podcast, best caregiver podcast, dementia caregiver podcast, dementia podcast, alzheimers podcast, caregiver podcast, senior caregiver podcast, dementia caregiver tips, frontotemporal dementia, dementia caregiver tips, how to deal with dementia as a caregiver, information on dementia for caregivers, how to be a caregiver for someone with dementia, family caregiver, Sue Ryan, Nancy Treaster, Susan J Ryan

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